Living Beyond Your Illness


Hello Luvs,

IF you haven’t read any of my blog before, you won’t know that I always start out my blog with “Hello Luvs”.  I had meant to write this long ago, but time gets away from all of us, so today the phone was on mute and the kitty was lying in her spot with me in the same room and it seemed a good time to write about this.  We can all get down and sad sometimes, even depressed.  I mean, having a chronic illness, or a list of chronic pain illnesses can get pretty monotonous to say the least! If you let yourself get in a “rut”, then you will panic and be sad and “down” and things only get worse from there. You can try to join a support group or make friends that share some of your illnesses. But you really must be careful in that as well. All things are good in moderation, is what someone used to say, right? I cannot for the life of me, remember who said that originally, but I know my mother said it to me many times.  She said “we need water to survive, but even too much water can kill you”. She was right.  Sometimes when we join groups and make friends who have the same or similar issues or illnesses as we have, things can get a bit “strange” at times. It may be a good thing but you just need to be careful as some people try to compare themselves to each other, see who is the sicker one, who is worse or better? Things like that! It is sad but true. The more and more that I work with groups for the past 7 years and with awareness events, projects and people in pain, like myself, I have seem it all.  Sometimes the people do the things they do to make themselves feel better, and that’s not all bad either! It’s great to make yourself feel better by doing something to help others. But when you do it for accolades, applause, gifts, patting yourself on the back or for someone patting you on the back, then it becomes a bad “game” of people hurting people instead of people helping people.

In my life, I first got approved for SSDI in 1998, due to CKDII and PTSD. They had called us the day before my scheduled Dr’s appointment with the SSDI office Dr’s, I’m guessing? They told my husband that they received all of the information from my team of Dr’s. They told him that “she doesn’t need to come tomorrow to see our physicians. She’s been through enough. After reading her history and stories from several of her physicians and Psychologist; we’ve decided that we don’t want to put her through having to tell her story even one more time! She is approved”! I was crying, I was so happy. The reason being, that when I have to go to a new Dr or a “scary” situation (due to the PTSD), I do get stomach aches and diarrhea and even vomiting!  I didn’t want to feel “judged” or ridiculed or afraid again. So that one thing, I did not have to do and I was so greatful for the “gift” of not having to be “sick” through all of the poking, prodding and questions.

As time went on, I ended up getting into a motor vehicle accident, just before I was thinking of trying to return to work maybe even part time? But the MVA just took that notion and threw it out the window!  I will make a very long story, very short. Because this writing is about getting “BEYOND” the illness and pain. I will just say that I suffered and still do suffer from many issues and injuries following that MVA, when a man ran through a red light and not only totaled our car but my body and my brain as well. You might say that my brain “seems great”. I am writing to you and all seems just fine! Not so much! I have suffered since that time from the aftermath of 8 surgeries, screws in my shoulders, both knees damaged, 2 pacemakers, a stroke or CVA and  a heart attack in ’05. I acquired an auto immune disease called “Combined Immune Deficiency Disease”, along with a Neuro-autoimmune disease called “CRPS” (sometimes called “RSD) and also known as “Complex Regional Pain Syndrome”. Mine went systemic or “full body” following my 2nd pacemaker surgery in 2013. The wonderful Neuro-Cardiologist at Univ. of Toledo Med Ctr. tried with all of his might to head off a full body attack of the CRPS inside of me. He did a “internal Bipvucaine surgical wash” and it was because as he went into my body, to replace my pacemaker, he saw that the old one had been wearing a hole right through my pectoral muscle for those past 10 years that it was inside of my chest! So he had to call other Dr’s to come and help him rebuild my Pec muscle first and then he wanted for that not to ever happen again. He tried so hard to stop a full body attack inside of me, from the CRPS. We were hopeful that he could do that as it has worked a few times in the past. But sadly for me, it did not work and I am now with CRPS “systemic and full body”.

After that surgery, which was not my last, I still had to have some jaw surgery, but that did go well. But I could have gotten depressed and given up on life. I don’t have an extended family as far as parents or siblings or Aunts, Uncles, cousins (just a few). It’s pretty much my husband, myself and our cat, Luna! We have 2 grown daughters with their husbands and 2 granddaughters with another on the way in June of 2016.  They are busy and have their own lives to live, but I’m very close to my daughters and so glad of that. Still, because I try so hard to downplay my feelings of being in pain, nobody really “gets it” except those who truly live or haved lived in the same house with me for an extended period of time. It’s hard to explain to friends and family that you are on medication for pain, but that mornings are still bad for me and the pain gets worse with each outing and the more I do. Nobody except someone with daily chronic nerve pain and more, can truly understand. It is OK though because I needed to find a way to help myself and not complain to everyone around me every minute of every day. It makes people tired to be around me if or when I do that. I learned that lesson very early on.

So I became involved in something other than thinking about myself. I became a “chemo angel”, a card angel, special assignment angel and I became a prayer angel. These are all for the same non profit org. I actually volunteer and I get daily emails of who to pray for and then I get a list of who might need a cheer up letter or card, with a small mail-able uplifting item. I get assigned a “buddy” who is going through chemo-therapy. I accept or decline the assignment and then I go from there. If it is a good “fit”, and usually it is; I accept and then I start to send a weekly letter and cheer up mail to them. I send small mail-able items, such as: magnets, book marks, tea bags and such. It is good for me and I enjoy doing it. I have a cat, as I mentioned above, her name is “Luna” but online and for chemo angel kids, she is “Angel Kitty Luna”. The stories for my assignments, which are children, they get stuff from “Angel Kitty Luna”. She writes stories about chasing bugs and jumping up at flies and swiping them with her paws. She tells of how she drinks water from the faucet and sleeps on me, her “momma”. She has exciting adventures and it makes the children smile for a few moments. That makes me happy and it takes my mind off of my own illnesses. I am not allowed to be sad or grumpy or talk about my own problems. I do not ask for nor expect, “thank you’s”. I hear back from some of my “buddy’s” and/or their families, and sometimes I never hear anything…that’s OK too.

I started to dabble in making jewelry one time when we were on an overnight trip with our daughter, who was about 18 at the time. We got some beads and elastic and just made a bracelet. Then I started to look for “awareness” beads online. I started making Awareness jewelry in earrings and bracelets. I would put them up online after I made a website and started to sell them. Then I started some fun other jewelry items as well, such as: Pet jewlery, Swarovski crystal necklace, earrings sets and just a lot of different things. People asked me to make jewelry for their wedding and wedding party. I was so excited to be doing something that I could do sometimes, at my own pace and I took no money except to replenish supplies. The money went to whichever charity the items were for, including the Humane Society.  If it was for a wedding party, then I made it their gift when at all possible.

I got involved in Bible studies when I could, but then I missed so much because they were all in the mornings or later in evenings and I couldn’t do well at either. I started making “groups” for support online and inviting everyone with any pain, or Invisible Illnesses to join. I made the groups “closed” and one is “secret” and one is just “private” and people can choose both or either one to join. I am the only administrator for the groups and it works well for me in that, this way not “too many hands in the pot”.  I don’t tolerate any drama and if I come across a post that is in any way demeaning or hurtful to anyone in any way, I remove it. I have  a couple of “pages” too. Some are ….or actually only one is for people in pain with Invisible Diseases, chronic pain and issues such as these.  The other pages that I have are for ” Angel Kitty Luna”, for helping those who’ve lost hope or who’ve been abused, also for my second love and my old career; that of ASL and Artistic Interpreting. That page is called “I Luv ASL”. I post information sometimes about different things that has to do with Deaf Culture.  Other times I post a song that I might do in ASL. I try to do an Artistic version of a top 40 song or a song to motivate people or make them feel happy.

I have a few very wonderful friends in “real life”, who truly understand or try to, when I’m unable to go someplace that we’d planned on going, for example. I try to go out to dinner once in awhile with my husband and these good friends. We have a really nice time, but then afterwards I’m pretty much exhausted and in pain. Same with putting some quality time into being with my lovely oldest daughter who lives only blocks away. We do something several times per week, but only for an hour to two at most.  Then the rest of the day I’m exhausted and in pain. But it is worth it because  I get to spend time with our granddaughters and daughter. On weekends we try whenever possible to visit our other daughter and son in law, who are due to have a baby girl, Kiera, in June of 2016 maybe once a month or so?

I have been a mentor for since about 2008, after having a mentor from them for a year after my diagnosis. It helped me so much to have someone who understood and could answer my questions and knew what I was going through. Now I try to do it back whenever they need my help. I feel like the Orsini family is my family too. I’ve become an Advocate for those in Pain, chronic pain and with Invisible disabilities. I’ve helped the I.D.A. by doing a feature commercial for them a couple of years ago. I write to try and give people idea and information. I love blogging and helping others. I do try to help other pain org. also at times when they might need me to write something. I have tried to be a health activist by writing for Pain News Network as a guest columnist and I am an avid “tweeter” about CRPS and chronic pain as well.

We can live beyond our pain even though we must live with it. I don’t mean that we should “make light” of it.  We can share experiences with others and have our friends that have pain. I feel we should also get “out of that” at times and have friends and activities not involving Dr.’s and only our “sick friends”. If you don’t feel well you might try music or writing, like I do? There’s always knitting, crocheting and things with your hands if they don’t hurt too much. Some can do Yoga, that’s not a thing I can do. But you see there are Bible studies and mom’s groups and libraries, coffee shops and a whole world of things to try and keep your mind off of your pain. I honestly have full body, systemic CRPS and I have several bad pain diseases such as : Rheumatoid and Osteoarthritis, Arnold Chiari malformation I, Degenerative Disc Disease with multiple herniated and bulging discs in my neck and lumbar spine with L-4/5 radiculopathy. I have Poloyneuropathy in Collagen Vascular Disease and Autonomic Neurapathy along with several heart problems and a pacemaker.  I have right long thoracic nerve injury where an 8″ span of nerve is broken and I have numbness in my hands/feet due to a CVA in 2006. I have Prinzmetal Angina which are Coronary Spasms. It’s alot and I have much pain. But the pain Dr. even told me “I cannot ever take your pain away, but I can try to make you more comfortable”. So that’s what we do. I take medications to help and I get about 2 good hours per day before I start to slide. I am unable to drive more than to just go to the corner store and get milk or eggs or something like that. So I truly know it’s not an easy thing to do.

Just try your very best to get involved in something, anything aside and outside of your pain. Try not to do something where you need a “pat on the back” or you need to “pat yourself on the back”. You don’t need to have a “title” or be a “important” or “special” person in the pain community because you ARE an IMPORTANT and SPECIAL person no matter what! Do something that makes you feel good just for you and believe me, if you can relax even for 10 minutes, it can be TV or music, a book or quiet time with your fur baby or babies. But those 10 minutes when your body and mind are relaxing will do you a world of good in your physical and mental world. Get someone to drive you if you are unable to drive and do something like a small outing even once per month. ..get out of the house if at all possible. These things will cheer you up, I promise! Lastly, find some organization, or a family that could use some kind of help that you are able to do or give?  Like I do the writing letters or even just join a prayer group at a church? Be someone who prays for others, that cannot hurt you? If you don’t have that belief, find something that you believe strongly in and participate in some way?

If we just concentrate on the pain, that is all we will have. If we just concentrate on Facebook, Twitter and/or online groups 100%, we must remember that all of these people that we associate with in the “illness themed groups” are also all fighting their own battles with pain. They can feel vulnerable, in pain and intolerable at times; when they may not mean to be that way at all! Make sure you are getting real and up to date information and double check it for yourself if you know how to use the internet. Help a group or a person in need ….you don’t need money to do that. You can do many things that you probably don’t give yourself enough credit for doing.

Know that I always have all of our lives best interest in my heart an soul and mind. I want only what is good for you and for me. I want to help and the other way to help is to “KEEP HOPE ALIVE” (my favorite slogan that I started using as a Meme and in other ways during CRPS Awareness month in 2013!!). Don’t lose hope and do not lose your temper. If you cannot sleep, that doesn’t help with pain either. Try as best you can to sleep or take a nap during the day if at all possible. Try to Live beyond the pain and use it to work for you and your life instead of against you and your life! Try to find something to make you happy and remember the best way to make yourself happy is by doing something kind for others without asking anything in return. Random acts of kindness are also free and do a lot of good for you and others. Peace to you and know that someone cares!

7 ways to fight Depression

I usually prefer to write my own blog, but I thought thus one might help someone else today as it hopefully will help me! I read it and it makes senses so now I just have to try herder to actually re-read and do and follow some of these suggestions :
I found these in a magazine called “all woman’s talk” ! I hope it Heps you too!

Depression isn’t something most of us like to talk about, and ways to overcome depression are even harder to come by these days. Depression affects millions of women every single year, including teenagers. I began suffering depression when I was as young as 13 years old, and didn’t understand what was going on inside of me, or how to stop it. I thought it was my hormones, and I’m sure some of it was. However, the waves of depression lingered until I was 19 years old, in small pieces throughout my whole entire teenage life. When I went to college my first year, I was so overwhelmed with the changes, loneliness and uncertainty of my future, that I found myself in a full blown state of depression for two years, causing me to suffer panic attacks, extreme sadness, and the inability to cope with the loss of my friends moving away, a recent breakup, and my parents’ divorce, which all happened the same time I moved to college. I was terribly embarrassed and had no idea how to cope. At first, I began to take medications prescribed from my doctor, until I found none of them worked for me and only made me feel worse. I felt hopeless until I began to seek alternative, natural treatments instead, on my own. What I discovered amazed me and ultimately saved my life. While I can’t say these will work for everyone, I can tell you that they are definitely worth trying. I discovered true happiness, strength within myself, independence and an incredible zest for life after implementing all of these natural ways to overcome depression into my life. Ditching prescription meds for natural solutions was the best thing I ever did for my confidence, health and my mind. I wanted to share these with all of you so that if you ever find yourself in such a state, you can feel empowered with options to try before seeking medication. I am not a medical doctor, so as always, do what works for you, and talk to people you trust, including a trusted physician.


Trust me, I know what it is like to not even be able to pick yourself up out of bed or off the floor in tears, much less to think of exercising as one of the best ways to overcome depression. In fact, I gained 20 pounds my first year of depression, and it wasn’t from the “Freshman 15.” I gained my weight from sadness, not from the cafeteria dining hall. I had never exercised much in my life outside of playing high school sports, and had just never seen the point. However, when I found myself overweight, I knew I had to do something. I started just walking 30 minutes a day and adding a few weight training exercises. Pretty soon, I found that it became a wonderful outlet for me to release anger, stress and even get an endorphin boost from something outside of food for once. Try to incorporate whatever exercise you can into your day. Don’t expect overnight results, but what you’ll find is that, over time, you begin to take pride in yourself because you’re exercising, and it rolls over into other areas of your life. Finally, I stopped seeing the need to diet and binge after I started exercising. It made me want to be healthy again, and it also warded off my bad moods. Sometimes I walked twice a day if it meant taking away my sadness. Do whatever you can, just do something.

I never ate regular meals, especially during my darkest days of depression. What was the point? Well, for starters, eating regular meals, and healthy meals such as protein, healthy fats, fruits and veggies, provide your brain with natural medication to fight depression. Protein and fat are excellent for your mood, and veggies and fruits are key for nutritional support. Your brain can’t work efficiently if you’re not fueling it properly. During my worst, I was eating nothing all day and binge eating at night. If I did eat during the day, it was a diet protein bar, which was basically training me to live off processed diet foods. Don’t buy diet foods; just eat real food. Eat a piece of fruit and some yogurt for breakfast, or my favorite, a fun, pretty smoothie! Also, eat a large salad for lunch with some protein, or a healthy wrap with some protein and veggies in it. Snack on almonds, fruit and yogurt, and for dinner, make sure you get in some veggies and protein. Food can be medicine all by itself, especially when implemented with exercise.

When I was depressed, I really didn’t want to talk to anyone about what was going on. My mother was so worried, it clouded her ability to talk to me like an adult, and my school counselor didn’t know me well enough to know exactly what I felt inside. What I could do, however, was write out what I felt, even if just to myself. Sometimes I didn’t even know exactly what I felt until I wrote it out. When writing my words down on paper and seeing what I felt inside, I was then able to deal with what was going on inside me. I took out my feelings through exercising, writing and focusing on taking care of myself, even when I didn’t want to. No one ever read my writings except me, but just knowing that I had expressed them somehow did wonders for me. Later, I was able to talk to my mother about what I felt, because I knew exactly what was wrong, by being able to write things out.

Not to sound like a crazy gimmick, but taking fish oil has done wonders for my mood and ability to fight depression. The Omega 3 content in fish oil pills is one of the best of all sources, and one of the most bioavailable sources. Omega 3 fatty acids have been proven to fight depression naturally. Fish oil is a wonderful source of these fats. I remember hearing this from Dr. Oz, and as crazy as it sounds, it worked for me, along with everything else I was doing included in this article. At the time, I didn’t like eating fish, but I was willing to take 4 fish oil capsules per day. Fish oil has been linked to diabetes prevention and heart disease prevention, but I found it worked extremely well for my depression by lifting my mood, and even improving my metabolism, which was terribly low from disordered eating. If you’re considering trying fish oil, which is also great for your skin by the way, then be sure to buy a nontoxic formula to avoid mercury exposure, such as Sundown Naturals brand. If you’re vegan, consider a plant-based Omega supplement, or try flax oil or hemp oil instead. Flaxseeds, chia seeds and hemp seeds are also wonderful foods to add to your diet for the same reasons. I eat all of these every single day.

I used to be so addicted to sugar, I might as well have been a spokesperson for Chewy Chips Ahoy cookies and Baskin Robbins ice cream. I couldn’t get enough of the sweet stuff, or the processed carbs. I had no idea what I was doing to my body or my brain by eating these foods. Sugar and refined carbohydrates are not only terrible for depression because they alter your mood and hormones, but they are also terrible for your weight and skin. My acne was out of control, as was my metabolism, and my mood was everywhere all the time. Once I took out the sugar and I started exercising, I noticed I felt like a new person. I had never felt so energized, and my mood had never felt so stable. I stopped craving junk food and started craving healthy foods like veggies, fruit and protein. It was a very strange feeling for someone who previously wouldn’t touch anything green. I finally felt like a whole person again and I haven’t looked back sense. Now when I want something sweet, I enjoy a little piece of dark chocolate or a fruit and nut bar like a Larabar to cure my sweet tooth. Ditch the sugar and refined carbs. Your body and mind will thank you for it!

If you’re new to what 5HTP is, then let me introduce you to a natural supplement that has done wonders for me. 5HTP is a chemical in the human body that naturally elevates your serotonin levels, much like antidepressants do. However, our natural levels of 5HTP can be depleted through anxiety, the foods we choose, or simply that our bodies don’t manufacture enough to help us beat depression. This is where taking a supplement has helped me. Natural brands that make 5HTP supplements such as NOW and Natrol are completely safe, and even can help you sleep better, which is always hard to do when you are depressed. I find that 5HTP is much cheaper online at sources like iHerb or Vitacost instead of in stores. I take one capsule in the morning with my breakfast everyday, and it has made a huge difference in my entire day, energy levels, and comes with no negative side effects. I noticed the changes in small ways, such as things didn’t bother me as much as normal, and my mood was just generally better. If you’re concerned with taking 5HTP, then be sure to research it before implementing it to make sure you are comfortable with it. I found out about this supplement through Doctor Julia Ross, who wrote The Mood Cure book, which even helped me overcome issues with disordered eating as well.

This was one of the hardest things for me to learn how to do. I wanted nothing more than to be by myself when I was depressed. I learned quickly that I wasn’t getting anywhere by doing this for very long. Being by myself only made me feel more depressed about the state I was in at this point of my life. I had three people who made a huge difference in my life during this time, and without them, I wouldn’t have been able to make it through my depression. I have my mother and two co-workers to thank for getting me through the worst times of my life. Even if you don’t realize it at the time, just spending time with someone can help you feel better about life and your personal situation. Someone else may be able to give you insight that you may not have thought of before too. Don’t fight depression alone. Life is too short!

Depression is a very serious health condition that you should take action upon immediately. If you notice depression continuously lingering or lasting more than two weeks, please consider some of these natural options and also consider talking to a trusted physician about your depression. Have you ever struggled with depression or overcome it naturally on your own?