Find a Friend

Having a chronic condition can get exhausting. It can dominate every thought and action. It can make you angry as Hell itself! It can even cause a sense of self pity if you let your negative thoughts ruminate too long. Some days can be just too hard to deal with. Sometimes that inner strength feels completely sapped. You can feel helpless, worthless, guilty and on occasion hopeless. You feel judged because so much is expected, yet you feel you just can't deliver.

I have gone through this "stage" of chronic illness numerous times throughout my life. It can stick around as little as a day, or as long as a couple of weeks. Plain and simple "It SUCKS".  However, I have come to realize that it's all part of the growing process. It actually helps you learn to cope.  It gives you stamina for the days ahead. Sounds a bit crazy doesn't it?  Well, it's really not.  There is a scripture that reads "all things work together for good..." Even those horribly bad moments in our life have a wonderful purpose. They mold and shape us into better and stronger people IF we allow it.

I find that when I'm going through those very hard moments in life it's so incredibly helpful to talk to someone. It can be a close understanding friend or extended family member, a counselor or support group member.  If you don't have someone in your life who will listen without judgement, then SEEK someone out!  You owe that to yourself.  My confidant is my childhood friend Mimi. She has MS.    We are always there for each other. We listen when the other is weak. We rarely give advice unless it's absolutely necessary. We just offer an ear and open heart. And we pray for one another. I feel it's healthy to have someone on the outside. The home can be stressful as it is and a family member such as a spouse or child may not be the wisest choice. If you are confined to your house and don't have anyone to talk to, seek out a support group on-line. There are so many options out there. I have benefited from this type of support many many times throughout my life.

I hope and pray that you find that special someone. It's imperative to have a friend to lean on and help you get through those very tough times.  And when you are feeling stronger, you in turn can return the support.

GMO's Is our American diet making us sick?

I have discovered some pretty amazing things about the foods we consume and perhaps why we feel so sick after we eat them.  It's been quite the process of elimination.  I first discovered that anything made of corn really bothered me. I would feel sick and really bloated shortly after eating. Sometime later, I decided to start an elimination diet.  I slowly stopped eating corn, then gluten, soy, some milk products and some fruits and vegetables. Strangely, I didn't feel any better.  One thing about our food is that these harmful ingredients can  hide in just about anything .  For Pete's sake, vitamins contain soy!
I then starting thinking hard about the way our foods are grown, and the way our animals are feed.  A light bulb went off! It's not the food, it's the GMO's!  So I read a few articles about genetically modified organisms. It seems that most of American grown corn, wheat, and soy are genetically altered. I began eliminating those foods along with processed sweets and white sugar. All I can say is "WHAT A DIFFERENCE IT'S MADE!"  My family who is gluten intolerant can now eat wheat as long as it's organic or imported from countries that ban GMO's.  It's also important to know that most of our zucchini, summer squash, and sugar beets are also GMO.  Read labels, all these products hide.
What I have found is that white sugar causes major inflammation in my body.   If I bake with organic sugar and organic flour I don't feel the side effects. Be aware, we are what we eat!

I think I've turned a corner.

Being diagnosed with EDS(Ehlers Danlos Syndrome) has brought many emotions to the surface of my life.  Part of me is relieved that my search is over.  There is a strange sense of closure.  I have had to accept some difficult realities.  I allowed my nursing license to lapse.  I have accepted the fact that I will no longer be able to return to my profession.  Even though in the back of my mind, I knew it was a long-shot, I still clung to hope.  Hope is a wonderful thing.  Even though things don't always work out the way you'd like, hope keeps you going in a positive direction. By nature I am a realist so I am accepting my limitations and trying my hardest to work within them.  I don't know what my future holds so I have to grasp each day and make the best of it.  I no longer want to postpone anything.  I have always wanted to visit Italy. It's my heritage and has fashioned me into who I am today.  I can't allow my limitations to stop me anymore.  I will figure out how I can accomplish it by my 50 th birthday.  My husband is concerned because I have trouble walking, but I feel, where there is a will, there IS a way.  I don't want to waste any more time.  Time has become very precious to me.  I want to spend it with those I love and with those who love me.  I no longer want to engage in anyone else's drama.  Drama causes stress, and stress causes more pain and even time spent in bed.  Over the past year I find myself less tolerant to stressors and stressful people.  I just don't want to be bothered with petty issues.  I want my life to be filled with purpose and laughter.  I want to be around positive, fun people.  Negativity is something that I have always easily absorbed from others.  I actually feel it physically. Perhaps some of these new found feelings and attitudes are a result of my accepting my condition and perhaps some just come with growing older.  I am beginning to feel a sense of freedom I have never experienced before and I think I like it.

And the winner is...........? Elhers-Danlos Syndrome

It's been many months since I blogged.  I can pretty much put a cap on it now.  I was referred to a geneticist in Cambridge Mass.  His name is Jeff Milunsky MD.  I went to his office in late March for an exhaustive exam.  They checked every square inch of me.  They took a very detailed exam of my family tree and all the major and minor symptoms from both sides of my family. They took blood.  My insurance would not cover some of the tests (but that's another story).  Anyway, the Doctor feels I have symptoms from two different types of EDS (Elher's Danlos Syndrome). Type 1 and Type 2.  Based on my mom and dad's history and symptoms they both must also have EDS, just different types..  I mentioned this in another post a few months back.  There is no cure and my personal treatment options are slim because of my drug sensitivities.  However, it puts a close to what seemed like the longest, never ending chapter of my life.  This may or may not help me but it certainly will help my children.  The condition has a 50% chance of passing to offspring. That explains a lot.  I am taking both of my girls in September to be evaluated.  Perhaps with an early diagnosis, they will be spared the pain and anguish I had to endure trying to convince doctors that there was something legitimately wrong with me. Both my girls have quite of few symptoms, although some are  different from my own.  I have noticed over the past year I have developed more issues with my joints. I surmise Father Time has a little something to do with it. I went to a Physical therapist and found out that the joints were subluxing. That simply means that they partially dislocate.  This causes a pain much like a tendonitis.  I am trying to learn how to put them back into place. The trial and era can be brutal. Once the joint gets put back in place, a massive inflammatory process begins.  This knocks my socks off.  Then roughly 24-48 hours later, my wrist or ankle or shoulder feel normal again.  The problem is that each day I awake with something different out of alignment.  It's annoying and tiring but I am going to have to learn how to deal with this.

Combatting Inflammation with a LOW CARB Diet

Well I got through the Holidays. Ate way too much junk. Gained a few pounds and payed the price with lots of inflammation.  I had the ALCAT Blood Test done per my Pain Doc.  The results made me sad. It took me a couple of months to accept the reality that I was sensitive to Sugar, Gluten, Garlic, Onions, Peppers, Artichokes, Coffee and a host of other beloved foods. I am now ready to give the new diet a shot.  I decided to do a high protein, low carb diet. This choice seems to fit best.  Having Chronic Lyme throws the immune system out of whack. Inflammation runs ramped. I was reading that not only do these food sensitivities cause inflammation, but Lyme bacteria feeds off sugar.  So I believe this approach may be an answer.  I have been on the diet for five days. It's tough!  I didn't know I was a sugar addict until I began.  The cravings are brutal. I also get headaches and increased body aches.  I read that this is all normal because I'm DETOXING.  I actually have moments that I feel like a true addict. I have to talk to myself and convince myself not to eat the gorgeous cupcake sitting on my counter.  I never looked at myself to have an addictive personality.  But man, this is hard work.  I take one day at a time. I draw on the support of the 4 F's.  Faith, Friends, FB and Family.  I need to do this. Not only for the weight but for my health. If it proves to work then this will need to become a lifestyle.

Being Thankful Regardless.

I couldn't get out of bed for a few days. When I mustered the energy, I went to see my primary physician who is also my Lyme doctor.  I told him the brief history from the summer months on. I explained about the oral surgery, the steroids and the antibiotics.  He totally agreed with me. Man, how often does that happen? We as patients can usually figure things out for ourselves. We live with the pain and symptoms every day.  Anyway, he told me that steroids are one of the worst things a doctor can give to a Lyme patient. It makes sense, because it shuts the immune system down and the bacteria go on a growing spree.  That's exactly what was stirred up in September.  After starting this second round of Doxycycline for the re-infected bone graft, the Lyme started to die off  and at the same time overloaded my body with toxins. This is what causes the classic Herxheimer reaction.  It basically feels like your body got rolled over by an 18 wheeler.  It's brutal. I just need to rest and keep flushing with fluids. So, at the very least, I know it's not the food sensitivities causing me to have this extreme pain. Although, I am sure my immune system will be much happier if I eliminate and cut back on certain foods especially sugar.   Now I just need to stay focused on getting through this flare.  Been down this path many many times.  Thank God I am going to my brothers for Thanksgiving.  I know I couldn't handle the holiday myself.  With all that goes on in a chronically ill persons life, there is always something to be thankful for. We have to work very hard to turn our thoughts away from our aching and broken bodies and look to all our blessings.  In doing that, it offers a bit of pain relief because our brain is only capable of  focusing on one thought at a time.  So count your blessings despite how crappy you feel.  ;)

A name for my other Mysterious Disease?

I know it's been a long time since I've blogged.  I was quite busy planning my daughter's wedding. It was a good distraction. The wedding was beautiful and the couple is very happy.
My "Lyme " pain persisted and the herbs did not work. I tried to ignore it and threw lots of pain killers and muscle relaxers at it. The warm weather moved in and I felt pretty good.  In August I needed a bone graft for a tooth implant. An infection eroded the bone in my jaw.  For 2 1/2 weeks post- op I was symptom free for the first time in like FOREVER!  I had no idea why but I was so incredibly excited. That excitement soon turned into disappointment when I figured out that the oral surgeon had given me dexadron.  Dexadron is a steroid. Steroid's reduce inflammation.  All my inflammation was gone, at least temporarily. But when the steroid wore off, the pain was back with a VENGEANCE!  I couldn't move my shoulder or elbow. At first, I wasn't thinking Lyme.  Lyme does not tend to stay to one joint. It tends to jump around.  The pain persisted and grew in intensity. Not even my pain meds were working.  I went to see my pain doctor. After talking and crying to him, he said he really felt I had EDS ( ELHERS DANLOS SYNDROME). It would explain a lot of the problems I've had all my life. All the crazy undiagnosed signs and symptoms. It's a genetic disorder. No surprise there. The collagen (the stuff that gives skin and tissues its elasticity and strength)) does not form properly. This explains the tethered spinal cord, the intestinal bleeding, the enormous amount of scar tissue found during my brain and spinal surgeries, my pre-mature old looking hands and a host of other problems like my stomach and esophagus issues.  BUT, my doc said it does not explain the severity of my pain in the joints. He felt the pain was too severe for EDS. So he was thinking that perhaps it's food sensitivity.  He sent out blood work (ALCAT) for testing.  Well, I almost started to cry when the results came back!!!! I actually didn't cry, but I wined for days!!!! I'm still whining.