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chronic illness

Coming Up For Air: Reclaiming Life With Chronic Illness


This past week may have been the hardest week of my life. I don’t think I have ever been so low before. I felt like I was in the bottom of a deep, dark pit and life with chronic illness had become suffocating. Until now.

As you know, I am in the process of fighting for disability due to my multiple chronic illnesses. In addition to filing for SSI with the help of an attorney, I have been trying to file my claim with my long term disability company as I have paid on a LTD policy for over eight years while working for my previous employer. When my doctor put me out of work, I thought that SSI would be the headache as I believed paying into a policy in case of circumstances such as this would provide necessary resources. After all, is that not the point of purchasing short term and long term disability policies? Needless to say, working with my LTD company has become a complete nightmare.

After months and months and 28485620 pages of medical records, I received a letter from the company that hit me like a ton of bricks. It felt like so much more than a denial letter. I am not sure if I have ever felt so judged, belittled, and demeaned not only as a patient but as a person. I am too young. I am too put together and look too well to be as sick as I am claiming. I am exaggerating my symptoms. I haven’t been to the hospital enough. I’ve worked this long being ill, why stop now. There were six pages of statements such as these.

Obviously feelings are probably at the bottom of the company’s priority list and avoiding making payments is at the top but the picture that they painted with the words they used of my life and the impact that multiple chronic illnesses have on every aspect of my life could not have been farther from the truth. They even tried to pin the doctors not only against me but against each other which added to the hurt. I had always bragged that I had such a great team of physicians supporting and advocating for me so it was almost a double whammy. At that moment, not only did I feel judged and disrespected by a faceless insurance company but betrayed by doctors I had grown to respect over the last ten years.

It was the hardest thing I have ever had to read. Thankfully my husband was home when I read the letter because honestly, I am not sure how I would have reacted if I was alone after reading the letter. It was like I had been stabbed in the heart and I plummeted very quickly into a very dark place.

I felt completely empty and even the smallest things took an enormous amount of effort. My anxiety was through the roof and I began to question everything.

The only thing I could cling to was the promise that God was with me through even the darkest moments. I had to believe that He was with me and had plans for me despite the hardships I was facing. Clutching Hope in one hand and the hand of my husband in the other is what got me through. He supported me in a way surpasses understanding.

So here I am a week later working to put the pieces back together. I had an appointment with my rheumatologist yesterday which helped to put me back on the path to healing (at least mentally and emotionally). He listened patiently and compassionately as I emotionally regurgitated my feelings and fears about the current my state of health and the disability process. He reminded me that no matter what the letter said that I have his complete support. He was worked with companies like these for years and they with exploit every loophole possible while pinning the blame of denying the claim on the doctors versus themselves. He had my back.

For the first time in a week, I feel like I can breathe again. I am ready to start reclaiming life with chronic illness and ready to start feeling like myself again. My true self.

I have purple dye on my hair as I type. I have plans to overhaul the blog design to get a fresh jumpstart. I am full of ideas to pour myself back into writing.

I am ready.

Fresh air feels good.

Photo credit: spinster cardigan / Foter.com / CC BY

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Rediscovering Me

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!

chronic illness

Starting Research

Last week, I had an appointment with my rheumatologist that I was a little anxious about. The last few visits to any of my chronic illness doctors have not been the most encouraging as we have gotten to the point where we have exhausted a lot of our options. John wanted to be sure that he made it to this appointment with me since we were going to be discussing future treatment options.

Since my last appointment (which fell right after I got out of the hospital for the third time this summer), I had boycotted my medications so I wasn’t sure how he was going to take it. I had gotten frustrated taking pill after pill but not having any results. Sometimes the side effects were worse than the initial symptoms and after a while, enough is enough and I had had enough. Granted, I don’t feel any better not taking the medications but I do not feel any worse either. I previously talked to Dr H (my obgyn) and she was ok with my decision except for the fact that I quit my thyroid medicine too (a big oops on my part – I did not really plan that one but kept forgetting). While I was already stopped, we decided to wait a couple of weeks to check my levels with the medication out of my system to see how it is functioning on its own since I was borderline when I started treatment. I should have the results this week.

When I told Dr. P about stopping the medications, he was supportive. Unlike a lot of doctors out there, he is in the “less is more” category. My first rheumatologist overmedicated me to the point where I could hardly remember my own name (and I only wish I was kidding) so it is nice to have someone who was not always pushing medication. Still we are facing the dilemma where my fibromyalgia symptoms are not being controlled, with or without medication. A new and rather starting symptom has made an appearance in the last few weeks as I have started experiencing numbness in my ring finger and pinky in both hands and my outer two toes. Since it was appearing symmetrically, I knew I hadn’t damaged the nerve as I would have to have injured four different nerves in the exact same way and function was not impaired, just feeling. After examination, Dr. P believes that it is just a new manifestation of fibromyalgia and nothing to be overly concerned about (although we will closely monitor). We are running a full panel of blood work just to be sure there is nothing hiding autoimmune-wise that could be affecting my chronic illnesses. Last spring, I also had good results taking an anti-inflammatory but then had issues with my liver count rising so we were not sure if it was a direct result of the medication or if it was tied to my soon-to-be-disclosed bowel obstruction so we are checking current liver function to determine if restarting an anti-inflammatory is possible.

The other item of discussion was disability. Honestly, it is a discussion that I never, ever could have imagined having at 31 years old. Ever. It is also one that has taken me a long time to even consider having it. It took much prayer, deliberation, and lunch date with a mentor to admit that it needed to occur. As it turns out, my rheumatologist also reviews charts for disability cases for insurance companies and while he was not trying to be discouraging, he wanted to be honest and helpful. The issue with pursuing disability with fibromyalgia is that there is no one test that can diagnose the illness and physically show its impact on the patient. There is no x-ray, MRI, or even blood test that I can show as physical proof of my diagnosis. He said that my endometriosis and chronic pelvic pain will be  easier to argue since I have physical evidence, such as surgery photos, as evidence of my disease. However, even with my multiple diagnoses, disability will be a fight because of the invisible nature of my illnesses and my age. We had assumed all of this going in but I was glad we got the conversation started.

We are not 100% decided whether or not we are going to begin the disability process but we are definitely starting research due to chronic illness. I am going to start looking up all of the steps that are involved in the process and start gathering my medical records. We also need to start putting together a budget as obviously if the decision to pursue disability is made, our income will be greatly affected. We needed to work out a budget anyways so this is definitely motivation to quit putting it off and get serious. It is also a kick in the pants to start learning how to coupon which I have always wanted to do but have been too lazy (if anyone has tips on how to get started, let me know!).

So that is where I am at right now. I definitely have more questions than answers and I am definitely nervous and anxious about what lies ahead but there is also some relief in getting the conversation started. 2013 is shaping up to be quite possibly a life changing year.

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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