I recently and repeatedly have had a very candid conversation with my kids about having a “cheap” summer. You know how it goes, “so, please do not ask for things every time we go to the store, do not ask me to take you expensive places, learn to entertain yourself, read a book, do some math, go outside, enjoy the pool, you have enough here…” It was during my third speech that I realized that I needed to have this conversation with myself. I have enough. I am enough.

My husband and I, (and I’m sure many others) walk through this life thinking we never have or are enough. We have talked about how we work so hard to have so little.  So little? Are we blind or just blinded by comparisons and perhaps a little jealousy? We, women especially, are conditioned to always think that they need to be more- more thin, more pretty, more put together, more intelligent, more successful….

There was a night long ago when I had to sit with my soon-to-be fiance and tell him that I may not be able to give him children. Fast forward a few years, we made two pretty awesome kids. There was a time when we had to look for a home and never thought we would find one or be able to afford one. We have a smallish, comfortable, welcoming, loving home. We did that all on our own.  No one helped us financially.  We weren’t able to live at home and save some money. Our parents were already taking care of our  younger siblings and  a couple of grand-kids. We have good jobs. We have transportation, food and clothes.  Our kids do not really want for anything. Do we have a summer home or a boat, or take extravagant vacations? Nope, but we certainly have enough.

I’m not saying to abandon all hopes and dreams of better or different things. I will have my farmer’s porch some day! I’m saying at some point and the sooner the better, we have to say enough is enough. Our mental health and self-worth depend on it.

I am enough. I am strong enough to live with RA and PCOS. When my house isn’t clean and I’m too sore to do much, I am enough. When I am overwhelmed at work, I am still an enough teacher. When I am overly frustrated and snap at my kids, I am still an enough mom. When I should be more attentive to my husband, I am still an enough wife. When I should be more appreciative of my family, I am still an enough daughter and sister. When I should be more present, I am still an enough friend.

And you, you are Enough!

I work with students who have suffered all types of trauma.  Now, the disgusting policy of separating immigrant children and their parents has brought the impact of trauma to the forefront, a place I truly believe it should always be. Of course, I discuss the concept of trauma frequently at work.  This past week, was the first time, I related my autoimmune issues to the idea. I asked a colleague if they thought my diagnosis constitutes as trauma, to which she quickly responded, “Yes, it has changed the way you live, the way you think and it has impacted your family in the same ways.” It got me thinking.

The word trauma is derived from the Greek word for “wound.”  My dictionary defines trauma as a deeply distressing or disturbing experience. When presented like this, day to day life events could be considered traumatic.

The DSM defines trauma as, “A direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s physical integrity; or witnessing an event that involves death, injury, or a threat to the physical integrity of another person; or learning about an unexpected or violent death, serious harm, or threat of death or injury experienced by a family member or other close associate (APA, 2000, p. 463). The second prerequisite (A2) required that the survivor must have experienced “intense fear, helplessness, or horror” (p. 467) following the event. Clinicians and researchers have criticized both requirements (Breslau & Kessler, 2001; Friedman, Resick, Bryant, & Brewin, 2011).”

I have been “not feeling well” since 2015. I was officially diagnosed with Rheumatoid Arthritis eight months ago. During that brief time, I was prescribed plaquenil, sulfasalazine, three different dosages of methotrexate, numerous cycles of prednisone and now methotrexate injections.   My kids have watched me become less of myself. I have mourned what I thought my life was supposed to be like. My husband is angry, and as my protector wants to fix me. (I am well aware that as a woman, I do not require protecting nor fixing, but you can imagine the stress, heartache and sadness that he is dealing with as well.)  This chronic illness has had a direct personal impact to my physical and mental integrity.  My loved ones have borne witness to it.

There are days that I feel great! I have energy and little to no pain. There are other days that are just plain hard. This past Friday, was my first round of methotrexate injections. My husband called our friend, a nurse, so he could walk him through filling the syringe. It was a disaster.  He was nervous. I was scared and to be honest, pissed off.  There it was, this syringe filled with some odd yellowish colored liquid. It just looked like poison to me. It felt unnatural to be injecting something so foreign into my body. We took a deep breath and did it. Then I cried myself to sleep as he held my hand under the covers. It was just one more blow to my self ideal.

Skip ahead to today, Sunday. (I felt like a truck hit me on Saturday, but I sort of expected it.) I woke up a little more refreshed than usual. I found my walk to the bathroom not as painful. By noon, I had folded 2 loads of laundry and returned to the bathroom to actually clean it.  I was able to get down on my hands and knees and scrub places that haven’t been properly cleaned in months! When I am done writing this, I plan on doing the same in the downstairs bathroom as well. I know I may be a little sore tonight or tomorrow, and that will be okay.  Who knows how long this dose or medication will work. For now, I am just grateful for it

So let’s revisit whether or not a chronic illness can be considered trauma. I wholeheartedly believe the answer is yes. I understand that my life and body will never be the same. I know that I need to alter my way of performing some tasks, as well as change the way I think about things. The latter is categorically more difficult. It is not easy to modify and reshape your thoughts.  Wish me luck!

Let me break this down. I am not living with RA.  Some days I do not know if I am even surviving with RA. Last week, I had a little to medium size meltdown over questioning if I will ever regain range of motion in my left hip and be able to cut my toenails again. What if my very accommodating husband isn’t around and I need them clipped? Then last night as I struggled to limp to the bathroom for the 3rd time that night (the amount of water I need to drink to flush the meds out is ridiculous) I felt him offer me his arm as he clumsily appeared next to me, more than half asleep, and helped me into the bathroom.

And I was worried about clipping my toenails!!

As I struggled to get comfortable in my bed, it hit me.  And it hit me hard! There is a very real chance that I may become unable to care for myself.  I look to my almost 92 year old grandmother in awe and wonder if I will ever be able to be like her.  She lives alone and can take care of a lot of daily things by herself, and this is after puncturing her lung and breaking her back requiring steel rods.

I get up every morning and limp around my house while getting ready for work and getting the kids ready for school. I go to work, and for those who know what my job is like, you know how my days go. I come home and by 6:30/7:00, my body has pretty much quit for the day.  Friday nights I take methotrexate. Saturdays are spent dealing with some light nausea, headaches and some serious fatigue. Sundays are usually good! By Wednesday nights, I feel as if the methotrexate has left my body.  I have finally tapered off of prednisone after A LONG, LONG TIME of crazy mood swings, night sweats, and too many pounds gained.  I guess the next step is to up the methotrexate or switch to injections.

For months I have been mourning the person I used to be, and mourning the future I once dreamt of.  My best friend is a very spiritual, positive person. She has told me so many times that I get from the universe what I send out into it. It’s just so difficult to think positively and not be sad or feel cheated.   I cannot tell you how many times I have uttered the words, “I’m going to make some positive changes, I’m going to take better care of myself, I’m not going to worry so much.”  So far, I have not been very successful at achieving those things.  But, I want the future I planned on. I want to be able to enjoy my life and be present for my children and husband. I want to dance at my children’s weddings and walk the beach with my husband when we retire.  I do not want to cry every night thinking of what should have been.

So, any positive words of encouragement or wisdom you can send my way would be greatly appreciated.  And if you catch me being bitter or sad, tell me to knock it off!

https://www.youtube.com/watch?v=gyi3N-y-GM4&sns=em

I know that I have been posting a lot on Facebook about dealing with chronic illness and pain. Some people have been inquiring about what is happening with me.  Here’s my story so far.

I was injured at work in October of 2014.  A very astute orthopedist realized I was not healing the way I should and ran some blood tests.  My inflammation markers were through the roof.  Since then, I have seen 3 different rheumatologists, and have been diagnosed with 3 different types of arthritis and fibromyalgia.  All I know is that my immune system is attacking itself, but I have no idea why. I am in pain every day. Some days are better than others.  When I flare, I cannot walk, I cannot clean my house, I cannot help my kids, I cannot do my job effectively, I cannot be the mom I want to be.  I hate it.  Not being able to do for yourself is a terrible feeling.  Not being able to sleep affects all aspects of your life. Being in pain all of the time makes you MEAN and DEPRESSED. I long for the days when I was only dealing with my PCOS symptoms. I’m told, “exercise helps with arthritis.” However, every time I attempt to exercise, my ankle swells to 4x its normal size, then my knee blows up, only to be followed by my hip. Add to that the fibromyalgia symptoms-stabbing pains in my neck, shoulder and collarbone, and you have one miserable mom, wife, daughter, sister, friend, and teacher.

I’m not writing this for pity.  I’m writing so people understand why I usually turn down invitations to do things.  I’m writing so people do not just assume that I don’t want to attend my kids’ sporting events.  I’m writing so people don’t think that I’m just lazy.  This entire process has not only broken me, it has made me slow down, take time when I’m in pain, and make heartbreaking decisions in regards to missing out on a lot of things. I have to ask for help, a lot! I’m blessed to have so many amazing people in my life.  My husband has been functioning as a single dad for quite some time now.  He cooks, cleans, shops, and takes care of the kids.  My parents and father-in-law drive up from Charlestown on a regular basis.  My mom has cleaned my kitchen and made us dinners.  Our friends have taken our kids to and from school and sports, and have helped to keep my husband sane. My friends have listened to me complain, cry and throw pity parties for myself.

I’m not sure when or if I’ll ever know exactly what is going on.  I can only hope that some treatment plan is developed soon.  In the meantime, I’ll keep asking for help, I’ll keep being sad when I have to miss things, I’ll keep posting random things about chronic pain, and I’ll keep pushing forward. Please keep sending positive thoughts my way.

Just to offer some perspective. This is what I’ve been walking on for over 3 weeks.  The swelling is now in my knees and hips as well.