Friday, August 29, 2014

It's been a while

I am working on getting organized after such a long time being ill.  One part of that organization is keeping this blog active again. For now, the best way to stay updated about the store is through my Facebook page

I feel the need to share these experiences with you all. It has become such an important part of my life and the reasons for my studies and the creations I share with you all.

Back in 2005, two  months after my husband and I were married, I had found out I had endometriosis which was confirmed by exploratory surgery. While they were in there, they burned off any scar tissue they found, along with giving me a uterine ablation to try and help my cycles be less painful and heavy.  The plan was if he did find endometriosis, which can cause infertility, we would start trying for kids right away instead of waiting until I finished college. The doctor came out before I even woke up to tell my husband that my Fallopian tubes were covered in scar tissue and I would not be able to have children. My husband and I said we want to try anyways and he said I have six months to try and then he wanted me on hormone therapy to slow the endometriosis. One week of trying and I was pregnant, which baffled the doctor. God had blessed us with a child, but so soon after the surgery and ablation I had done, the doctor diagnosed me as high risk and was certain that I would lose the baby. In fact, with some occasional bed rest because of my hip pain and other problems, we had our son Gabriel 2 weeks before our 1 year anniversary. We had to have neonatal ICU there because I was a week past my due date and when my water broke it was black and green. Gabriel had his first bowel movement inside of me. I hemorrhaged after he was born so that was not fun. I was pretty weak while I recovered from that.

 I stayed in school through all of this and ended up graduating with an associates degree when Gabriel was 2 years old. We decided that summer after graduating that I needed a break from school because I was burnt out trying to be a wife, mom, and student. We also decided that since my cycles were getting very painful again, we should try for our second child. The doctor had told me that natural child birth would make the endometriosis go away. It did start coming back, so we tried for a week and then Lilith was growing inside of me.  I also had such a terrible hospital experience that I will not go into as it's pretty personal. We decided we wanted to have Lilith at a birth center. Because of the hemorrhaging I had with Gabriel, we decided a RN midwife would be the safest option, which turned out to be the right choice. After delivering Lilith, I did hemorrhage again, worse than I did with Gabriel. I almost bled out and died, but having and RN midwife, she was able to administer the medicine to stop my hemorrhage. We were back home with Lilith 3 hours later. It was an amazing experience and my husband got to catch Lilith. I highly recommend natural birth to anyone who will listen now because it was such an empowering and forever cherished moment.

I started studying aromatherapy and herbalism to help handle my cycle pains, hip pains and also to make products for my son daughter who both had incredibly sensitive skin and many respiratory problems. I'm glad I did because it has been very beneficial to our family. I have had chronic pain for years in my hips, and I had always contributed it to my time as a gymnast because it is a sport that is pretty hard on the body.

After having my first child, my hip pain was horrible and I was having trouble enough to seek out a specialist. I found a sports surgeon who said all my scans looked normal and said I probably have a build up of scar tissue from my time as a gymnast. He prescribed some physical therapy and told me to come see him again when I can no longer walk because he though I was too young for surgery. I was actually quite offended that he just wrote me off because nothing was visible on the scans. The physical therapist I had was amazing though and she was able to find exercises tailored to my overly flexible body and the stabilizing kept my pain manageable for a few more years. I remember the physical therapist always saying she was very concerned by the amount of swelling at the base of my spine/tailbone area, and honestly I was worried about that too. Ice, heat, aromatherapy, turmeric and white willow bark helped me manage my pain for several more years. We were also able to go on a gluten free diet and use herbal supplements to help my husband deal with a painful condition he had involving his digestive tract. We were really doing pretty well. I was loving being a wife and mother, and we got into gardening as well.

April 2012 I was rear-ended by a person while I was sitting at a stop light. I sprained my wrist and shoulder as well as having horrible whiplash. My neck vertebra were actually bend the opposite way and twisted around. It took 6 months of therapy and I still wasn't getting better. Every time the chiropractor would adjust my neck, spine and hips, they would move out of place right after leaving. The chiropractor was very frustrated and so was I. We decided to have the doctors clear me even though I was not getting better so I could close the insurance claim and deal with my female problems.

By the time Lilith in 2012 turned three, the cycle pain was terrible again, needing medical attention. We did another exploratory surgery and while the endometriosis had not come back, I did have adenomyosis which would eventually make my uterus fall apart inside of me, and it was already halfway there. I then found out there was a history in one side of my family of the women having problems with hemorrhaging during cycles and prolapsed uterus resulting in emergency hysterectomy. The doctor my husband and I decided that another pregnancy would be too risky given the way I hemorrhaged with the first two, so the doctor recommended a partial hysterectomy now while I was still young instead of waiting till I was older and possibly had an emergency hysterectomy situation. So a month after the exploratory surgery, I went in for the hysterectomy

I had a bad reaction after surgery.  We are not sure if it was the anesthesia they used, the pain medicines they used, or the antibiotics they always pump through you when you have surgery, but I ended up having an adverse reaction.  I could not breathe on my own for 8 hours and they had to hook me up to an alarm that went off every time I fell asleep because my breathing would drop below 6 breaths per minute. My digestive tract also completely shut down for 8 days. They sent me home the morning after my surgery with no dietary restrictions. Three days later I was back in the hospital with a partial intestinal blockage. I had to stay there 4 days, 2.5 of those days I had an N/G tube and was put on full intestinal rest.  It wasn't until I sent my husband to the store to grab some herbal teas that my digestive tract woke back up. I told him to get stomach ease and healthy fasting, both blends by either Yogi or Traditional Medicinals, I don't remember.  The herbs stimulated my digestive tract and in a day and a half, I was released to go home.  Unfortunately, it took a year of constantly losing weight before I was able to start absorbing nutrients again.  I lived off of herbal teas and broths, then after 6 months soups and smoothies, because anything else I ate went right through me. My body was so badly damaged, I could not digest and absorb regular food. I would start to gain weight and then I would react to a food and rapidly lose weight again. This October will be two years since my surgery and I'm now at a healthy weight again and keeping it on.  I can no longer have many forms of dairy, one of my favorite foods are dairy based. My latex sensitivity turned into a full blown allergy which also now includes foods in the latex family. I have had to cut out bananas, kiwi, and avocado out of my diet as they cause allergic reactions now.  I hope one day by body can handle them again. So far, I can eat cheese again without a reaction, so I will keep hoping that with herbs I can keep healing my body to at least handle some of my favorites like sour cream, butter, and cream cheese. I miss those so much! I now have to carry an Epi Pen, Benedryl and an emergency inhaler everywhere I go in case I have a severe response to something.

During this time, as I was too fatigued to keep up with Scentsory Creations, so I started working on a Clinical Master Herbalist Certification. It is taking longer than I would like, but I am plugging along and happy with deepening my knowledge of herbs.

This traumatic experience also triggered a worsening of symptoms in my hips.  Fast forward to this year. I finally got to the point I could no longer walk or stay on my feet more than a half and hour before having to ice for swelling at the base of my spine. I could not handle it on my own with herb and aromatherapy any longer, and I had to start seeking out a new specialist because there was no way I was going to go back to that sports doctor. I went to a general surgeon this January because the swelling was really concerning me. He said it was my hips and he does not do hips, so he sent me to a hip specialist. I couldn't get in to see him until April, but it was worth the wait. He diagnosed my problem within minutes and he also said he thinks I have a connective tissue disorder. His first thought was Marfan, which had him very worried. It can affect the connective tissue of the heart and when Marfan goes untreated, the life expectancy is 30 years. I'm 31, so he put everything in motion. I had a shot in the joint, an MRI to confirm his diagnosis and he sent me to a cardiologist who ordered the genetic testing for connective tissue disorders. That all happened in the span of a week. Once the cardiologist looked at my heart, he wasn't very concerned and then we had to hurry up and wait for the genetic result to come back. We got the results in June which showed negative for Marfan, but an unknown gene variant in one of the other genes that is connected with Ehlers-Danlos Syndrome.

The summer was a blur of travel, doctors appointments, tons of research on this rare syndrome which will be called EDS from now on. My world has been flipped upside down and I have my first appointment with a geneticist next week. I will end here as this has been a lot already catching up to the present.  I will post again this weekend telling more about what I have been dealing with since I received that test result.

Time and again, aromatherapy and herbs have been so beneficial for our family. This is why I started Scentsory Creations, mainly as a hobby to share my creations, things created for my own family to use, and give me a positive goal to work towards as I look to the future. I love to help people learn to take care of their health naturally. It brings me joy in the midst of my daily crippling pain knowing this gift God gave me is going to help others who want to care for themselves in a more natural way.


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