The past two months have definitely been a struggle. When I knew that I would be leaving work and would be on medical leave long-term (and pursuing disability) due to chronic illness, I thought that I would just have this huge load lifted off of my shoulders and things would magically fall into place. I wouldn’t be as stressed. I would have more energy. I would have the freedom and passion to write and I would be on my way to fulfilling my dream of writing a book.
I could not have been more wrong.
I knew the fight for disability would be tough, especially SSI. I thought that my private short-term disability would be smooth, my private long-term disability would be a challenge, and SSI would be a battle. Two things surprised me right out of the gate. The good surprise was finding a lawyer who wanted to represent my case right off the bat. The bad surprise was the unexpected pushback from my short-term policy. i have had this policy for many years and have worked with them on many occasions but have never had any type of difficulties. It is so hard to not completely freak out as it is so overwhelming and is obviously a very big deal. The logical part of me wants to curl up in the corner rocking in the fetal position but the other part of me wants to take a deep breath and trust that God is in control. I knew upfront that the decision to pursue disability was a leap of faith. I felt with everything in me that God was leading me to take that step and I still feel like He is leading the way. Is it incredibly scary? Abso-freaking-lutely. All I can do right now is cling to His promises and know that He is in control and He is faithful to provide.
I also had the understanding that medical leave wouldn’t completely alleviate my symptoms but I had expected a quicker adjustment to being at home. I thought that I would definitely notice a relatively immediate decline in the chronic fatigue that I had been experiencing while I was working. I knew that my pain wouldn’t disappear but maybe it would become a little more manageable. What I wasn’t prepared for was a new diagnosis. Earlier in the year I had been experiencing some numbness and tingling in the outer portions of my hands and feet on occasion. Because it was symmetrical, my rheumatologist concluded that it was likely a manifestation of my fibromyalgia. Right before Abby’s birthday, the numbness and tingling had spread to my entire hands and feet and had definitely begun to interfere with my daily life. When I was driving, I constantly felt like I needed to shake my hands and feet awake. I struggled with typing (which was one of the reasons for my time off from blogging last month) and I had issues with my grip opening doors and jars. It was definitely very alarming. After consulting my pain management doctor and my rheumatologist, I was given the diagnosis of peripheral neuropathy and we started treating it with Cymbalta. Thankfully after four weeks of treatment, I have experienced a significant decline in symptoms. Hallelujah! A treatment that works right off the bat! I was due for one of those! It has also had a positive impact on the joint and muscle pain related to my fibromyalgia. Unfortunately, my pelvic pain and nausea have been crippling but you’ve got to focus on the good things in life right?
Then there is the writing. I’m not sure what is going on there. I thought that once I was home full-time that I would be completely uninhibited and that the words would just flow through my fingers. I have had so many things going through my mind but when I sit down to write, I feel like I just stare endlessly at the blinking cursor on the screen. It is like I have a brick wall in my mind. Words cannot express how ready I am for Type A Conference! Only 112 days! I really need some refreshment and revitalization!
I think the main thing with all of these concerns is the struggle to rediscover my identity in this new chapter in life. I’m no longer a working mom. After our trip to the beach in two weeks, Abby will be with a sitter three days a week through the summer so I am looking forward to (but a little nervous) about taking on a more SAHM role. I’ve never done it so I am a little worried about not being able to fill the shoes I have created for myself. I love Pinterest but man can it put some unrealistic expectations about motherhood in your head. Can I get an amen to that?
There have definitely been a lot of changes in my life and I’m sure there are more to come and while I am a little apprehensive, I am also a little excited. It is an opportunity for discovery and growth as a mom and a wife and more importantly as an individual (which I think sometimes we as women tend to overlook). Here is to discovering a new kind of normal!
10 comments on “Rediscovering Me”
good luck on all your journeys, both the external and the internal. I know you will come out on top but suspect some parts may take time (i.e. SSDI, self re-defining)
My SSDI hearing (denied on first papers) is the 19th. talk about nervous/terrified. I think when I have TOO much to say, I get paralyzed and say very little
I know nothing about disability other than I’m sorry that it is such an uphill battle, but writing I know. Writing does not come easily when you build in more time for it. Writing does not come easily when you are in pain (never mind that it is a sedentary activity–I can’t write when, say, I’m recovering from surgery). Writing does not come easily when you are first starting a new project. In fact, for all that I love it, writing is just plain hard! Be patient with yourself. If you sit in front of the blank screen long enough, words will come. Sometimes I have to break out a pencil and paper first, or sit outside, or talk it out with someone, but eventually you will get started. Blessings on this phase of your journey! I think the world needs to hear your words in book form!
Good luck on your journey, I thought being at home not working with more time to myself it would be easier but it isn’t easier. I can find it very hard to motivate myself and it hasn’t alleviated my health symptoms, I find it very hard to find a balance but I hope you do find a middle ground xx
I can so relate to the writing thing. I’ve been working on my boom for so long. It should be done. But it isn’t. It’s crazy how when you lay down at night, so many words come to you, but when you go to put them on paper, they are gone.
I’m praying for you girlfriend. So happy to journey through life with you!
I know what you mean about ideas coming to you at night! I really need to keep a pen and paper on my nightstand for when inspiration strikes! Goodness knows I should not trust my memory!
YOU MAY NOT BE “WORKING”. BUT LIVING WITH A CHRONIC ILLNESS IS A FULL TIME JOB.” IT DOESN’T COME WITH AN EMPLOYEE HANDBOOK” OR “PAY” AND IT IS 24/7 NOT 5 DAYS A WEEK 8 HOURS A DAY
I feel like finding your blog was such a gift. I too have endo and have since I was in my early 20’s. Here we are a decade later and not much has changed. I work in retail for a major communications company and after three surgeries in less than a year they are requiring that I return to work or I lose my job based on job abandonment. I’m in constant pain and unable to stand for more than 30 minutes without vomiting therefore unable to return. I’d love to come back to work. I haven’t been paid in over four months with work denying my disability and losing my job will cost me my insurance. Its like they think I’ve taken this time to become a world traveler. I wish! I’m a mess. Its hard not to get discouraged, feel alone and sometimes want to crawl in a hole and not come out but in reading your blog I know I’m not alone. Thank you for being my encouragement. You are in my prayers.
Thank you so much for writing and sharing.
I, too, had a complete hyst, and bowel resection during that surgery. May 5, 2006. With complications and more surgeries to follow. Sorry to hear of your recent challenges!!
I decided yesterday that I need to apply for SSD. For myself and my family. and It has been an emotional journey to say the least.
My husband and I met our beautiful daughter through the miracle of adoption.
I have actually been thinking of starting a blog in this new chapter in my life.
Your blog title finding new normal brought me peace.
My total hyst was on May 30 2008 so we weren’t too far apart in losing our lady parts although it doesn’t seem that it helped too much considering both of us requiring subsequent surgeries. Darn endo! Big congrats on adopting! We met out beautiful little girl the same way! What year did you adopt? If you say 2009 its going to be creepy since that is when we adopted our girl! I have turned everything in for SSD and now just keeping my fingers and toes crossed that I receive a positive verdict on the first try but I know that practically never happens but maybe for once in life I’ll get lucky! I’m no SSD expert but if you have any questions about getting started let me know!
[…] the adjustment in beginning the disability process. It was definitely a challenge to figure out a new sense of normal for this next phase of my life. The new diagnosis of peripheral neuropathy brought along with it a […]