How did I end up here? Where has everyone gone? I remember the good ole days, when I had many friends and was always doing things and going places. What happened to us? What happened to me?
I used to be carefree and spontaneous. I loved traveling, going to concerts, football games, dancing, karaoke, you name it. Not anymore. I’m falling apart and my world is closing in. I can’t let it.
The more pain I am in, the less I want to do. People just don’t wait around for people like me. My friendships have faded to only existing on social media. I see the pictures they post and they see mine, and that’s the extent of our relationships. My friends have distanced themselves and I don’t blame them. They want to do fun things and I’m physically limited. I get it.
I hate what’s happened to me. I still do some things, but I have to work around my illnesses. It’s annoying. I can’t be spontaneous anymore, everything is planned, partly due to pain, partly due to OCD.
Pain has affected my attitude, too. I’m positive the OCD adds to it, but I find that I get angry, frustrated, and stressed out over small, stupid things. I’ve mentioned before that I like things to be done a certain way and things kept in their place, and it upsets me when that doesn’t happen.
Every day when I wake up, I literally plan my whole day in my head. It’s ridiculous, really. If anything unexpected throws my plans off, I react negatively. I know I’m not the easiest person to live with because of it. I’ve found that I overreact by freaking out, then calm down about it, and then feel embarrassed for my actions and have to apologize to the recipient(s) of my wrath. It’s all so unnecessary.
I regret giving in to my pain and irrational frustrations. I gave up on me and spent the majority of my waking hours in a recliner watching TV, reading, or surfing the internet on my laptop. My doctors kept telling me to exercise and lose weight, but I didn’t listen. Until now.
I’m ready to find myself again. I’m ready to stop wasting time. Yes, I suffer from chronic pain, but I can’t let it control my life. I can’t sit here and merely exist while life passes me by. I am taking steps to improve my health and increase my activity. I’m going to try not to let little things bother me. I will think about things before I react. I have to practice patience, because things aren’t going to change overnight, but I am committed to getting mentally and physically healthier. I will find me again.
I recently found out that I am prediabetic. A few months ago, my A1C was at 5.9, just over the low number for prediabetes. I changed my diet and six weeks later, my A1C was at 5.1. Even though my A1C level had already dropped, my doctor recommended I join a Diabetes Prevention class, so I did.
The Diabetes Prevention class is held one evening a week, FOR A YEAR! Whoa! That’s a huge commitment. But, okay, I signed up to see how it goes.
I’ve attended six classes so far. Some of the classes are held at the gym, where I am encouraged to exercise and increase my activity. Other classes are held at the Diabetes Treatment Center, where the focus is on healthy eating. A certified nutritionist talks about food choices and shows us how to cook and prepare healthy foods.
In the beginning, we were all weighed and measured. We also did blood work to check our A1C levels. We are weighed before every class, but only have to do blood work every three months. I am required to lose five percent of my weight within six months, then another five percent in the second six months. That doesn’t sound like it should be too hard.
The classes started out very slow and boring. So boring, that I was tempted to stop attending. There are a lot of handouts that could have been written by a 10-year-old. The speaker asked us questions like he was speaking to children. Not only was I bored, but with the back issues I have, it’s painful to sit in the hard chairs for an hour. Finally, during the 4th class, I learned something. That’s when I decided that I would keep attending the classes.
I’ve learned that being active is VERY important for preventing diabetes. It helps with how your body produces and uses insulin. These classes really stress exercise. They want us to exercise 150 minutes a week, and to track it. For someone who has been pretty sedentary for the past four or five years, it’s been a challenge. For me, it’s easier to break it down to ten minutes, three times a day, for five days a week. I’ll admit that I don’t always meet my goals, but I’m working on it.
The other thing these classes focus on is weight loss. I’ve learned that I need to eat more fiber, less processed foods, and cut refined sugar. This is another big adjustment for me. I crave sweets and don’t eat healthy, because most of the time, my chronic pain prevents me from standing in the kitchen long enough to cook. Most of the time I eat something quick and easy or food that is brought in. I eat what I want, which usually isn’t healthy food. I have some very bad habits, but I’m working on clean eating now.
I know how important it is for me to eat healthier, so I looked into several meal delivery services. The main problem I’ve come across, is finding food that is safe for my food allergies. I decided to try BistroMD, because they have several selections that are safe for me to eat, meaning that they don’t contain any ingredients I’m allergic to. Unfortunately, their snack selections almost ALL contain nuts or pea fiber. I’m allergic to nuts and peas. I can’t tell you if the service works for me or how the food tastes yet, because my first shipment comes in this week. I’m excited to try it, though, and after I do, I’ll write about it. If I don’t like it, I will try another one.
Right now, using a meal delivery service is my best bet for getting on track. Maybe when I lose weight and feel better, I’ll be able to transition to cooking food myself. The most important thing I have to do is stay with it and not give up! I certainly don’t want to add Type 2 Diabetes to my list of health issues. Who knows? Maybe eating better and losing weight will alleviate some of the other symptoms I suffer from. I can do this!
I’m exhausted. Literally. Just because I did a little bit of house cleaning. My grandson turned three years old today, and my daughter is having a birthday party for him at my house in two days. Why my house? Because hers is too small to host very many people. I don’t mind letting my kids use my house to host parties, as long as they take care of the food, guests, and any other party-related things.
I have a fairly big house with a swimming pool, which makes for fun times. I want to make sure it’s nice and clean for people to see, especially people that have never been to my house before. The problem is that I have fibromyalgia, and I run out of gas pretty fast. I have to do a little at a time, because my body can’t handle when I do too much. I don’t even know what “too much” is, because no matter what I do, I end up tired with body aches.
Today, all I did was clean the refrigerator on the patio – inside and out, and wash a few loads of laundry. I am so achy that I had to push through a shower. Hey, showers are a lot of work when you have fibromyalgia! And, since I’ve had surgeries on my lower spine, I can’t bend very far, so drying off is a chore in itself! Right now, I’m relaxing in my recliner, aching all over. My feet are throbbing and I don’t want to move.
Fortunately, my younger brother (who lives with me and my husband), helped me out by mopping the tile floors and cleaning two of the bathrooms today. He’s going to mop the wood floors tomorrow. I don’t know what I would do without him, because I just can’t do it all by myself anymore. I still have a lot to do tomorrow.
The funny thing about it, is that my house always LOOKS clean, and I’m sure I could get away without doing much at all. I have OCD and have to have everything in its place. I am very organized. My house just isn’t always DEEP CLEANED, because it’s hard for me to keep up on it. Before I had fibromyalgia and chronic pain, that was a different story. My house was always clean. It’s just very hard on my body to do a lot of deep cleaning, so I only do it once in a while, usually when guests are coming over and I’m forced to.
My brother asked me why I am doing all of this to impress people I don’t know. Why do we worry about what other people think? I just do, enough so that I kill myself doing it. I will physically pay for it over the next few days, but it really bothers me for anyone to have a negative impression of me. It’s a battle I have inside myself. It’s not easy living with fibromyalgia and OCD.
My experience with food allergies started when my youngest child turned a year old. The pediatrician I had for my two older children believed that cow’s milk is for calves, so he suggested I feed them soy formula. He said that I could introduce them to cow’s milk when they were a year old, and I did, with no problems. I had a new pediatrician when my youngest child, a boy, was born, but I decided to stick with what worked for my two older children and only gave him soy formula, too.
After my youngest son turned one, I gave him some cow’s milk and then put him to bed. A little while later, he was crying, so I checked on him. He was very swollen. Everywhere. His eyes were practically swollen shut. I took him to the E.R. where they treated him for an allergy. I couldn’t sleep that night, because I was afraid he would stop breathing.
The next day, I took him to see his pediatrician and discuss what happened. The doctor said that he probably was bitten by a spider or something. That didn’t make much sense to me, but since he wasn’t too worried about it, I wasn’t either.
That evening, I gave my son another bottle of milk. The same thing happened. He swelled up. When I saw the doctor again, he referred my son to an allergist for testing. I didn’t give him any more milk.
About a week later, my son had the allergy tests done. I could not believe the results! The list of things he was allergic to was quite long. Dairy, eggs, corn, peanuts, bananas, dogs, cats, birds, horses, eucalyptus, mold, mites, and on and on. I was told to keep him away from everything he was allergic to. How did this happen? No one else in our family had food allergies.
I quickly learned a lot about food and allergies. I subscribed to the Food Allergy Network and bought a cookbook with allergy-friendly recipes. My shopping trips took a lot longer now, because I had to read every label. I didn’t want to buy products that had any of the allergens or derivatives in them. I changed the way I cooked for the whole family, so that there was no chance of cross contamination. I still made family favorites, but tweaked my son’s food.
I taught my son at a very young age not to eat anything from anyone outside of our family without checking with me first. He always took his own lunch to school. Prior to each school year starting, I met with the teachers to discuss my son’s food allergies. I gave them a bag of goodies to keep that were safe for my son, so that when the class had a party for a holiday or birthday, there was something special there for him.
The average person doesn’t understand how serious food allergies can be. When my son was in kindergarten, his class made peanut butter playdoh. The teacher sat my son off to the side, where he played with real playdoh. When the bell rang, the kids ran outside and played tag. One of the other students tagged my son on the neck, and because she didn’t wash her hands after playing with peanut butter, he had an allergic reaction. His eyes and face swelled up, he got hives, and was having trouble breathing. All this from an allergen only TOUCHING his skin! There was another time that my son had a bad reaction from a child hitting him in the face after eating scrambled eggs with his hands.
When my son was in second or third grade, he dropped something on the ground at lunch. One of the women on yard duty thought he threw it down, so as punishment, she told him that he had to pick everything up off the ground. He told her that he couldn’t touch the food on the ground, because he had food allergies. She asked him what he was allergic to, so he told her. She said, “Do you see any milk down there?” She was ignorant to the fact that milk was an ingredient in some of the foods that were on the ground. Since he wouldn’t pick up the food, he was put on detention. I went to the school to talk to the Assistant Principal to help her understand why my son wasn’t allowed to touch food. I told her that I don’t mind him being punished if he does something wrong, but they were not to punish him with food, because it was dangerous to him. He has allergic reactions just from skin contact.
While growing up, my son handled his food allergies well. He was very careful about what he ate. Fortunately, it wasn’t long before he outgrew his allergy to corn, which gave him a lot more food choices to eat. You’d be surprised how many foods have some form of corn in them. Unfortunately, he never outgrew any of the other food allergies. To this day, he’s never eaten an egg. Since he’s allergic to both the white and yolk, he can’t have it at all. He still has never had anything containing dairy. We learned how to prepare things that are safe for him without those ingredients.
In 2004, I had an allergic reaction to nuts. It was scary. I had allergy tests done and found out I’m allergic to peanuts, walnuts, almonds, pecans, cashews, pistachios, and green peas. Prior to the allergic reaction I had, I ate peas and peanut butter often. The worst part about it, is that I have to be very careful when I eat anywhere other than home. I always have Benadryl and an Epipen in my purse. Food allergies are just a way of life for my family.
I’ve had back pain for many years. It used to be nothing that a few trips to the chiropractor couldn’t “fix,” but it started getting worse. I was in constant pain.
I went to the doctor, who referred me to Pain Management. The pain management doctor started me on Cortizone injections in my lower back and SI joints. He also referred me to physical therapy. I got the Cortizone injections about four times total, but they didn’t work. Neither did physical therapy.
Next, I went to see an orthopedic surgeon, who sent me to get an MRI. He said that the MRI showed degenerative disc disease at L5-S1 and some posterior bulging. He said that it could easily be fixed with surgery and it would take away the pain I was suffering from. That sounded pretty good to me, so I opted to have the surgery in October, 2016 and only stayed one night in the hospital.
After the surgery I was in so much pain I thought I was going to die! I’ve had 15 surgeries over the course of my life and I’ve never been in as much pain as I was in after this one. I was taking Oxycodone every four hours and Dilaudid every four hours, but not at the same time. I took pain medication every two hours, alternating the two. I was so heavily drugged that my mom said I was like a zombie. It was necessary, though, because I couldn’t handle the pain.
I continued taking pain medication for about six months. I was miserable. The doctor kept prescribing them and I kept taking them. I was going to physical therapy, but was still suffering from pain that I couldn’t deal with. In July, I tried to make yet another appointment with the surgeon to discuss the pain, but he no longer worked for my medical group. He left the state.
I had to see someone, so I made an appointment to see another orthopedic surgeon. I was so glad that the original surgeon was gone, forcing me to see someone else, because the second orthopedic surgeon wanted to find out why I was still having so much pain. He also reviewed my records and told me that he NEVER would have done spine surgery on me in the first place, because the problems I had weren’t that bad. He asked why I didn’t get a second opinion and I immediately felt “stupid” for not doing so.
He sent me to get a CT scan. The results showed that my spine never fused and the hardware was loose. Apparently, that’s why I was in so much pain. So, I had to have surgery to repair the problems. I wonder how long this would have gone on had the first surgeon not moved out of state, because he never bothered to check it out?
I was scheduled for two surgeries this time, because the surgeon wanted to go in from the side to secure the spine from the front, then go in through the back to finish the repair. It took months to get scheduled for surgery, because the doctor needed space on his calendar to fit the two surgeries in. On January 2nd and 4th of 2018 I had the surgeries. I was in the hospital for a week.
The doctor grafted cadaver bone and injected cells into my spine to help it fuse. He also replaced all of the hardware from the first surgery with bigger hardware. I had to wear a bone growth stimulator for nine months after surgery and a hard turtle-shell type of brace for a few months. I was in pain for a short while, but NOTHING like the pain I had after the first surgery. I only took Oxycodone for about a month after the second surgery. I did not take any Dilaudid at all.
About four or five months after surgery, I noticed a big lump on my side where the incision was. It turns out that I developed a surgical lumbar hernia where my side incision is. I was referred to the surgery department to have it repaired, because it was quite large and my kidney was right by the opening. I had that surgery in August of last year. Healing from the hernia repair surgery was very painful. It felt like my skin was being pulled apart and it was hard to breathe. Fortunately, the pain stopped for the most part after about a month.
I have seen the second orthopedic surgeon a handful of times since surgery and am scheduled to see him again next month. I STILL have back pain. Unfortunately, the pain is worse than what I had before the surgeries. I had another CT scan and this time, my spine is fusing and everything looks good, but I still hurt. The surgeon said that the pain I am feeling is most likely due to Fibromyalgia. He said that he never would have performed surgery on me, because I have Fibromyalgia and it’s difficult to tell what is causing the pain. He only performed the surgeries because the first surgery was unsuccessful and needed to be repaired.
I regret ever having spine surgery in the first place. I am still in pain, except now it is worse, because I can’t do things like I used to. I can’t bend easily from my lower back, because my spine is fused. I have screws and rods from the L3 to S1 discs. I have cross bars at L3-4 and L5-S1 and disc spacers at L4-5 and L5-S1. I also have a bone cage at L5-S1. Just turning over in bed is difficult. Drying off from a shower is exhausting.
I have a lot of work to do to be able to physically do some things, but so far, the surgeon hasn’t given me permission to lift any weight over 15 pounds. He told me not to go to the gym or lift anything heavy, because my fascia is very thin. He said that he doesn’t want me to bend my back, but sometimes I have no choice. Even then, my body doesn’t work like it used to. I’m not sure what kind of exercise is safe for my back. I do take walks, but after a very short time, my lower back hurts. I also have a lot of foot pain from my past foot surgeries, which I talked about in an earlier blog.
I wish I would have seen the second surgeon first, because I never would have had spine surgery. I did learn from this experience, though. I will never have another surgery without a second opinion.
As I’ve mentioned before, I was diagnosed with Fibromyalgia about 15 years ago. I’ve seen several different doctors and specialists for help and answers. A couple of years ago, I came to the realization that the doctors aren’t much help. Sure, I’ve tried different medications, but most of them either have worked for only a short time, or not worked at all. The most effective medications I’ve taken so far are Gabapentin and Flexeril, but even those aren’t as effective as they used to be.
I’ve spent a lot of time reading books and articles on the internet about Fibromyalgia. I joined Facebook groups specifically for Fibromyalgia sufferers, hoping to learn helpful tips. I have friends who recommend things that will help me feel better. If someone recommends anything to me, I try it. Believe it or not, I’ve spent thousands of dollars chasing remedies and/or anything that will give me relief. As you probably know, one of the symptoms of Fibromyalgia is chronic pain. I have good days and bad days, but most days, I hurt on some level. Suffering from chronic pain has made me desperate, so yes, regardless of cost, if there is something out there that is said to help with pain, you bet I’m going to try it.
I’ve tried an elimination diet, twice. The only thing that did was make me depressed, because I wasn’t allowed to eat things that I love. I hung in there for a few months, but without feeling a change, I stopped that diet. I’ve tried natural remedies, but none of those have worked either. I was told that I would feel a lot better if I used essential oils. After spending hundreds of dollars on oils, and using them religiously for months, I had no changes at all.
I’ve read that CBD oil really helps with pain relief. I have friends who swear that CBD oil works for them, so with an open mind and hopeful expectations, I spent almost $1,000 on what is considered high-grade CBD oils and pills. When I take it, I don’t feel anything at all. I definitely don’t feel better.
Some people have said that hyperbaric oxygen therapy helped them. I went through hyperbaric oxygen therapy several times for a MRSA infection in my foot. Not only did it not help the infection, it did nothing to alleviate my fibromyalgia pain.
Why hasn’t anything worked for me? It’s super frustrating and my husband is tired of me spending money on things that don’t work. I don’t blame him, but I also feel that if there is something out there that can help me, I should try it, regardless of the cost. If I find anything that helps with fibromyalgia pain, I’ll share it! For now, I’m sticking to a traditional low fat high fiber diet for weight loss and increasing my activity levels. More on that soon!
I have fibromyalgia, which means that I suffer from chronic pain. Over the years, I have had quite a few surgeries – 15 to be exact. In retrospect, there are some surgeries that I never should have had. Since my surgeries, I’ve come to learn that a lot of the pain was related to the fibromyalgia, and no surgery was going to fix it. This blog relates to the foot surgery nightmare I endured in 2009.
I had pain in my right foot when I walked a lot, so I went to an orthopedic surgeon to see what was wrong with it. He told me that I had a neuroma, and it was easy to fix with a simple surgery. That sounded great, so I scheduled the surgery. I was feeling pretty good after the surgery, and was looking forward to walking without pain.
About two weeks after surgery, my foot developed a hole where the incision was. I’d say the hole was about the size of the tip of an eraser at the end of a pencil. I asked the surgeon about it and he literally said, “Hmmm. I don’t know why the incision is opening up, but I can sew it closed again.” He didn’t bother to figure out why the hole was there. Fortunately, I had recently quit my job because I was struggling with health issues due to fibromyalgia and I no longer had the medical insurance coverage I had when I had the surgery. I only had coverage through my husband’s medical insurance, which meant that I had to go to a different medical group and hospital.
I went to the new medical group, where they tested the hole that had formed on my foot. The tests showed that I had MRSA, which is a staph infection that is difficult to treat. Thank goodness I had to use the new insurance, or the surgeon would’ve closed the hole with the MRSA in it! Apparently, I contracted the MRSA during surgery. I was referred to the wound clinic.
I went to the wound clinic and the doctor tried to treat the MRSA infection. He cleaned the wound out and man, that was painful! He stuck a long q-tip type stick in the wound and hit a nerve! Ouch! He put some kind of bacteria fighting cream in the hole and covered it. I was told not to put ANY weight on my right foot, so I used a wheelchair. This went on for a couple of weeks with no progress, so the doctor referred me to an Infectious Diseases doctor.
Getting treatment through the infectious diseases clinic was awful. The doctor said that I needed a strong antibiotic that I couldn’t take orally. I had to go to the hospital to have a Peripherally Inserted Central Catheter put in. A PICC line is a long tube that was placed in my arm and positioned in a large vein near my heart for long-term medicine use. I had an IV in for weeks. My husband learned how to put the medicine in the IV every day and I had a home nurse who checked in on me a couple times a week to draw blood and check the IV and medication. I was still using a wheelchair to get around, but I had to lay on the couch with my leg up the rest of the time.
I finally had the PICC line removed and stopped the medication, because it didn’t work. I still had MRSA. I went to see an orthopedic surgeon who told me that he couldn’t do anything for me, because the infection was in the tissue. He recommended I see a plastic surgeon. Meanwhile, the Infectious Diseases doctor gave me a referral for hyperbaric oxygen therapy.
Being locked in a hyperbaric oxygen chamber is no fun, at least not to me. I had to take a shower and not put ANYTHING on my skin afterwards. No lotion, no deodorant, no hair products, nothing. I had to change into a hospital gown and lie down in the chamber. I could not take a book or anything else into the chamber with me. The reason for all of these rules is that they do not want anything in the chamber that can possibly cause any type of spark. The chamber is full of oxygen and can ignite. If that were to happen, they couldn’t open the chamber until they brought the oxygen level back to normal, which takes time. Inside the chamber, they take the oxygen level to that similar to a submarine. Fortunately, they did let me watch movies through the glass, and I could hear through speakers in the chamber.
Being in the hyperbaric oxygen chamber gave me high anxiety. I had to take anti-anxiety medication to get in the chamber and I was afraid to move at all once I got in there, because I was afraid of causing a spark of any kind. I know I was going overboard with my thinking, but that’s how I felt.
During the time I was getting the oxygen therapy, I went to see a plastic surgeon. The surgeon said that she would perform surgery to clean out the MRSA. FINALLY! I had been jumping through hoops for months, all because the insurance company wanted me to try cheaper remedies, which in the end, cost them more. After five months of failed treatments and staying off of my foot, I had the surgery.
After surgery, the doctor told me that the MRSA had eaten through bone, nerves, and tendons, so she had to remove some of the bone to get all of the MRSA out. My foot healed and I was finally able to walk after eight weeks post surgery. Unfortunately, because the MRSA had eaten through bone, my toes were all leaning to the right, and continued to get worse. I ended up having a third surgery five years later, to straighten my foot and toes. I now have a steel plate and some screws on my big toe, and some screws in my second toe. I also have two big scars on my foot: one on top, one on the side. I recently got a tattoo of a peacock feather over the scars to draw attention away from them.
Guess what happened a few years ago? I started having pain in my left foot, just like the pain I had in my right foot. After learning more about fibromyalgia, I found that it’s very common for fibromyalgia patients to have foot pain. I went through that whole horrible ordeal with my foot for NOTHING! Not only do I have pain in my left foot now, I STILL have the pain in the right foot that I had surgery for. The only thing I got out of having the foot surgery is difficulty buying new shoes, because my foot is wider now.
I’ve had other surgeries that went awry, and will write about those in other blogs. The main thing I want to get across is that if you have fibromyalgia, make sure the surgeon knows about it! If you are contemplating surgery because something is causing you pain, your situation may need to be handled differently. It definitely should be handled carefully. Sometimes, fibromyalgia pain is the problem, and surgery won’t fix it.