Today is a GOOD day. I woke up with energy. Could raise my arms enough to shower. Pain is not beating me in the side or the head or the legs. Call me happy (nice to know this can still happen). That said, I am not going to spend today inside, on my chair, staring out the window. I am going to go outside..at least while I can and get some air. To fill in...my friend Laina is making her blogging debut. I love Laina (and you will too) She's wonderful and has been a real Angel to me. (Insert loud applause here...) AT: Turing off the computer, sharing my angels...
I’m Laina, Kathy’s friend in Denmark (recently emigrated from Texas).
I sent her a letter in response to her video on Day 82: Tired of Being Sick. After watching that video I was compelled to reach out to her. Not really sure if my letter would do anything, but I had to at least try. I sent it off to Florida the next morning. About a week later I was reading through all my blogs on Google Reader and saw the title of Kathy’s post, Day 90: Touched by an Angel. I was in tears immediately after reading the title alone.
Since then, she and I have kept in touch via e-mail. We’d e-mailed back and forth several times when I received a package from her. Like an anxious little kid at Christmas, I opened up the package and inside was a beautiful little wire bound journal. The front reads: “Aspire to Be." (How appropriate!) Included with the journal was a wonderful letter. Towards the end of the letter, Kathy asked me if I would be interested in doing a guest post on here. It’s probably a good thing we’d talked a bit otherwise I likely would’ve been too chicken shit.
I’ve been thinking about starting a blog of my own (I’m a blogging virgin), but have yet to make that commitment. I’ve got a lot to say and I hope I can do this post justice without it dragging on forever. So, today I am jumping in head first. I’m a bit nervous, but mostly excited about the opportunity.
On to the topic at hand, LIVING! With Chronic Illness.
I’ve been dealing with chronic pain for about 10 years and polycystic ovarian syndrome (PCO/PCOS/PCOD) for about 17 years. The pain was the result of a pretty bad car wreck.
After struggling to cope with the pain and doctors thinking it was in my head or I was drug seeking I was FINALLY diagnosed with thoracic outlet syndrome in May 2010. It was frustrating as hell trying to get them to believe me.
Being in the medical profession myself, I could understand where they were coming from. I saw patients all the time who were truly drug seeking. The addictions can be quite severe and the withdrawals are excruciatingly painful. That’s a big reason I strongly advise using caution when taking any meds that are addicting (or have the potential to be).
Over the years, I’ve slowly learned how to live with the pain, as well as the depression coupled with it. I’ve had pain meds and muscle relaxers, which I treated as if they were gold. I was always saving them, just in case I ran out.
I had one doctor decide that he needed to ‘pop’ my back instead of giving me something for the pain and spasms. I must say, I felt amazing afterwards! Unfortunately, that lasted for a whopping 30 minutes before my pains returned, and worse than previously. I’ve also tried diet and exercise. Mind you, I couldn’t even hold my arms up long enough to blow dry my hair, so the exercise part was a joke for me (at least at that time).
In March 2010, I had an awful ear infection. I went to the doctor probably 5 or 6 times in the course of about 5 weeks. I was on antibiotics (both pills and drops), steroids, pain meds, and I don’t even remember what else. They sent me to an ENT (ear, nose, and throat doctor). He looked in my ears and then took me under the microscope. Apparently, I had one hell of an infection.
In the end, what had happened was my chronic spasms were also spasming around my ear canal. The ear canals were getting irritated, inflamed, and wet. Because of that, I had a plethora of yeast in there. He told me the only way to ensure this doesn’t happen again is to stop the spasms. So, with that I had to go for an MRI of my cervical and thoracic spine.
Everyone was surprised to find out that my MRI was completely negative. I was in tears over it, and they weren’t happy tears. I was pissed. I wanted to throw a tantrum like a 2-year old over those results. I wanted it to be a bulging or ruptured disc. I needed visual proof there was something wrong with me! I wanted to rub it in the doctors’ faces. Then, I began thinking it was all in my head.
From there I was referred to a physiatrist (rehab/physical therapy doctor). He sent me to physical therapy. They were all surprised to see my MRI was negative, as well.
The physical therapist who did my evaluation said that with my range of motion and muscle atrophy, I was a classic case of a ruptured disc (or more). I began therapy and had multiple steroid shots (like 16-20 every visit) in my neck and back for about 3 months. These were very helpful, but the effect was highly localized and only lasted 4-6 weeks.
I moved to Denmark in August 2010, and without the shots and the PT the pain returned, with a vengeance. I had another ear infection 2 days before Christmas, and had to go see another ENT (over a month later). He pissed me off. He dismissed everything I said, treating me as if I was a child who just likes to stick my fingers in my ears. I was so mad I was shaking. My husband tried to reiterate my point to him. He was ready to send me on my merry way and then asked me if I wanted to have my hearing tested while I was there. We did that, and afterwards went back into the doctor’s office. This time his attitude seemed to have changed a bit. He realized that even though my ears didn’t look like anything was wrong, there was damage. My hearing sucks. Anyone who knows me knows that. Now, not even 30 years old, I get hearing aids.
Since then, I’ve been to my family doctor, a dietician, and a gynecologist. I’ve got tons of meds to take, and I’m watching everything I put in my mouth. I’m exercising daily, meditating, and trying to take things one day at a time.
I’ve had some rough days. Some days where I hurt so bad I don’t get out of bed all day. Those are the days I rely heavily on my husband. He is wonderful about it, and will bend over backwards to help me out. Some days I feel so shitty that I tell him first thing in the morning that all I want is to lie in bed and be snuggled all day long, but I am trying to push myself everyday.
I have tried several things to relieve the pain and depression over the years. I don’t know if you will try any, or if you have tried any, but it wouldn’t hurt giving any of them a chance.
- Meditation or Chakra Balancing - You can meditate for healing, energy, calm, anything.
- Aromatherapy - Can also be used with massage.
- Color therapy - I am working on adding more color to my white-walled apartment. You can even buy a rainbow of colored glasses to wear if you want.
- Music therapy - Sing a song, or just listen to something that make you feel relaxed, energetic, whatever you’re needing that day…or hour.
- Healthy living – While this may not make your problems go away, it will aid your body in healing itself. Over time, your energy levels will rise and your pains will likely decrease.
- Positive thinking - I know that can be hard on the days you feel like absolute crap. I suggest recording your happy, healthy, energetic feeling self a pep talk. Watch or listen to that, as many times as it takes to help you through that hump.
- Let others inside – The people around you care a lot more than you give them credit for. Don’t hide away, and don’t try to suffer in silence.
- Take a nap, or stay in bed all day - Some days can be so bad that it’s best to avoid the day altogether. However, I don’t recommend doing this often.
- Be thankful for the day you have been given
- Take a long hot shower (or bath)
- Psychotherapy - I’ve been going to therapy for the past 16 years, and it works. There are also pain therapists out there. I’ve not been to one, but I have relatives who have. I highly recommend this option. If you’re never been to a therapist before, don’t go in thinking they will fix you. They are there to give you the tools and confidence to help yourself.
- Take it one day at a time - If one day is too large of a goal, start with a minute or 5 minutes and work your way up, just remember to not sell yourself short.
Believe that your mind is stronger than your body. You are the one in control. Good luck with your journey!
P.S. I’ve decided to set a goal for myself, right now. I will start my own blog no later than June 1st. I have tons more to say!
Altered today: Fear of blogging, feeling of empowerment over pain