Having a chronic illness will keep you on your toes

At the age of 20, I had a spinal cord stimulator implanted to help my RSD. A SCS is the idea of a tens unit; the difference between the two is a SCS in internal. The purpose of a SCS is to mask the pain signals before it hits the brain. Paddles and wires are implanted in my spinal cord, and a battery is placed in my lower back/hip region. What’s really cool is I have a remote that controls the stimulation, so it gives me the ability to adjust and change different sensations in different areas of my limb. The battery that is implanted has to be charged once every 2 weeks, as well as the remote. Even though the battery is rechargeable, it has to be replaced every 7-10 years. 

For the last year, I have been having issues with my stimulator battery. Lately the battery has to be charged every 2-3 days, and it does not hold a charge. The only way I can charge my battery is if I am sitting in bizzare positions. I had an appointment with my pain doctor, and 2 hours was spent trying to reprogram my SCS. After talking with my doctor and the Boston Scientific rep, it was agreed it would be in the best interest to change out my battery ASAP. 

I received a phone call on Wednesday from his office confirming  my surgery for November 15. My doctor wasn’t joking when he said he wanted this done ASAP! My SCS has helped me in so many ways, and this is a resource that I benefit from greatly. The procedure seemed simple when it was explained: open up my back, pop out the old battery, pop in a new one, sew me up and call it a day. It’s an outpatient procedure, so at least I can be comfortable at home.  It’s never easy to go through surgery, and Im not going to lie 4 surgeries in a 1 year span is intense.

 I realized that this upcoming surgery is actually a milestone; after this procedure, all the surgeries on my left leg will be done. Technically I am half way done with my surgical journey! It’s such a rewarding and satisfying feeling seeing how far I have come mentally and physically.When you can see the eye on the prize, it makes you fight harder so you can win.. Keeping an open mind can be quite challenging in the beginning, but it gets easier as time goes on. When you’re having a difficult day, think about the things you are grateful for. It could be as small as getting out of bed and taking a shower, or sitting outside getting fresh air. I could give a laundry list of everything I’m grateful for, but today I am extremely grateful I will be getting a new SCS battery. 

Friends Love You For You

“Friends are like your backbone. They are always there when you need support” (iliketoquote.com). Friends are there for a reason, and want to help when things become difficult. When you need to cry your eyes out, sometimes you need someone to listen. There may not be anything a friend can say that will make the pain diminish completely, but knowing someone is there can help tremendously. 

I am a type of person who will drop anything for my friends, but I do not take the time to care of my emotional well-being when things become difficult. I never want to complain to others about what is going on with me physically or emotionally. I grew up learning that others do not want to hear about the negatives in your life, so I tend to focus all of my energy with on the positives; I’m learning this may not be a healthy motive all the time.

While being on the phone with a friend, I noticed I had tears rolling down my eyes. The tears were not directly related to my physical pain, but the emotional pain I haven’t processed yet. As the tears flooded out, a sense of calmness arose I felt like a weight was lifted off my chest. I continuously thanked my friend for listening to my nonsense and she replied gently: “I love you and I want to know what’s going on in your life. You’re going through more than someone should, and you have to open up to others and tell them. You can always come to me”. 

I can’t be afraid to tell people how I truly feel, otherwise I will be alone handling life situations. Friends can be great support systems, and if they really care about you, they will be there for you during the good the bad and the ugly. Sometimes you need the reassurance that it’s okay to reach out and ask for help. If friends truly care about you, they will not judge you; they only want what is in the best interest for you.

24 Hours After Surgery

Yesterday I had my third surgery on my left leg, and I’m excited to say we are all confident this is the last surgery for this leg. Before I went into the OR, the surgeon explain when my muscle tore last week, it actually helped in regards to the surgical process. When it tore, it lengthened my achillies, but not enough to eliminate surgery in total. Before the surgery was performed, a nerve block was done, and it was agreed that a ketamine infusion be performed while I was under anesthesia. Ketamine can be beneficial for individuals who have RSD/CRPS as it can slow down/prevent spreading of the disease. 

When I woke up in the PACU, I was feeling pretty good and wanted to go home. I didn’t see the surgeon when I woke up, but he did speak with my dad about how surgery went. The surgery was successful, and the surgeon was able to lengthen my achillies without difficulty. He was not concerned about my achillies rupturing in the future, and did not feel it would have the be severed (THANK YOU LORD). He also explained there is a 50/50 chance I will need braces on this leg, which left me feeling really hopeful. 

At 8:00 last night, I recieved a voicemail from my surgeon checking in on me. He said how well I did in surgery, and woke up immediately after it was over. He talked about how happy he was, and is confident this is going to help. I was shocked I got that message from him, as I’ve never gotten a call from him checking in on me. I was smiling as I listened to this, and kept thinking I am blessed to have a surgeon that truly cares. 

Taking Care of Your Mental Health is Important

Everyone goes through some form of pain, and handles it in their own way. This pain can be physical, mental, or emotional. There is always help for anyone that may be struggling, but the first step one has to take is reaching out for help and accepting that you can’t solve your problems independently. It’s hard to admit when you’re struggling, and can be embarrassing to ask for help. There are many thoughts that can go through one’s mind about how others may view you for needing help. For a long time I was afraid of what people would think of me for asking for psychological help. After going back and fourth with myself for a while, I finally told myself to cut the shit on procrastinating and ask for help. I was tired of being afraid of what others thought, and I needed to put myself as a priority.

I entered counseling two years ago, as I needed help. I was struggling coping with all that was going on, and was spiraling into a deep depression. It was difficult to accept that my life was drastically changing, and I would have to learn how to adapt being permanently disabled. I was sad about everything, and had a laundry list of things I was grieving about: loss of independence, not being able to finish school, limited mobility, and loss of relationships. I hated how much was out of my control. Every doctors appointment that I would go to, I would leave there bawling my eyes out as doctors were stumped and couldn’t help. It was mentally draining hearing doctors continue to blame my symptoms to my psychiatric issues, even though I knew something more was wrong; I felt completely hopeless. I was tired of being labelled as a drug seeker, and I felt like no one was listening to me. I stopped being social, and struggled reaching out to close friends. In my head, I felt the people I loved wouldn’t want to spend time with someone who is constantly in pain with an unknown reason of why this was occurring. I felt like everyone was judging me, and thinking I was making this up to get attention. This was a time that I felt alone, and no one understood how much emotional pain I was feeling. 

I became defensive towards providers and would have my guard up ready to fight back. Doctors were dismissing my situation, and I was determined to prove them wrong. My gut was screaming something wasn’t right, and my heart sank when I learned that my gut was right. The day I learned I was facing amputation, is when I started giving up on myself. I was so angry it took so long to figure everything out, and all I could think of was the comment multiple providers repeated numerous of times: “you should have came to us sooner”. I truly felt defeated.

I was devestated and furious with myself. I started mentally beating myself up that I should have done more; I was convinced this was my fault. I became hyper focused on trying to figure out what caused my legs to develop dystonia, and continued to harp on what I should have done differently. I knew things were going to get better, but the feeling of failure would not go away. I became so sad knowing I needed amputation; I wanted to use my legs all I could. I began walking around the house without my crutches, forcing all of my weight on my contracted/paralyzed toes and frozen ankles. In my mind, I wanted to enjoy using my feet all I could before they were taken away from me. When looking back at this period of time, I recognize how unhealthy this behavior was. This was the only control I had, and I felt like I deserved to be in pain. 

I remember having lunch with a close family friend, who disclosed how concerned she was about me. She is a neuropsychologist, and is someone that I have always respected and viewed as a big sister figure. She urged me to get myself into counseling to do trauma work. She looked at me and said that it’s worth the emotional pain to take care of yourself. This was the best advice I have taken from someone. 

I increased my counseling sessions to twice a week, and was consistent going to them. I wanted to get my life back, and I was willing to do the work. I began utilizing cognitive behavioral therapy (CBT)  with my therapist, and did self help workbooks independently so I could incorporate CBT daily. Medication was adjusted in hopes to to help with my anxiety, depression, and ADHD on a chemical level. I encorporated mindfulness, and started using the creative arts as my form of meditation. Painting was always somethings I loved, but I lost the drive to continue. I forced myself to do some form of art weekly, whether it was painting, writing, or knitting. I focused on holistic approaches to help with my pain management, and would learn that is also helped my mental health. I got myself involved with the Reflex Sympathetic Dystrophy Association (RSDA) and started doing work with their peer mentor program and became a member of their grant committee. 

It has been 8 months since I started counseling twice a week, and it makes my heart happy to see that my hard work is paying off. I’ve noticed I am happier and calmer all around, and my anxiety/depression has been decreasing substantially. My anger has been diminishing, and I feel like myself again. My anxiety will creep up at times, but I’m able to intervene and use healthy coping skills to help with these feelings. Im not afraid to ask for help when I need to vent, or even sob my eyes out. Growing up I have always hated the word patience, and it is now one of my favorite words. When you put in the work, be patient and you will see positive results. 

The best gift I could have given myself was to take care of my whole self. There is still work I need to do, and I will continue to dedicate my energy on getting better. When life becomes difficult, hang on because it will get better. Reliving painful memories is never easy by any means, but it will strengthen you as a person. The strongest thing one can do for themselves is ask for help.

Muscle Tear 6 Days before Surgery

I have been experiencing a lot of pain that feels like something is tearing/ripping in my leg. We knew there was a possibility that my achillies would tear on its own, but this was something we were not too concerned about. Our understanding that if my achillies tore or ruptured, it would not be the worst thing.  On Tuesday I woke up and found a lump on the side of my calf with severe pain. As the day went on, the swelling increased, as well as the pain. If I moved my leg, the tearing sensation would increase. I put in a call to my surgeon who was pretty sure my achillies had torn on its own or was beginning to tear slowly. The doctor wanted me to call him the next day, and update him on the status of everything. 

After being awake all night from the pain, I looked at my leg and it was bigger than it was the night before. It looks like a baseball is popping out of my leg. I called the surgeon and was told to come in and see his physians assistant. When I saw her, she said my achillies was in tact, but I did have a torn muscle where the ball sized lump was. She said there’s a possibility my achillies is tearing but we will not know that for sure until I go into surgery. There is questioning if I have damage to a nerve as I don’t have sensation in half of my foot and heel, or is the swelling causing the numbness. The only way to correct this is with surgery, which is in 6 days. It was recommended I stay off my leg as much as I can due to the swelling, and it is crucial the swelling stays down as it will impact my surgery negatively. 

As much as this situation stinks, it’s nothing I didn’t expect and it could be worse. The appointment overall was positive, and I am grateful there isn’t signs of a blood clot. The treatment plan for the time being: puppy snuggles and binge watching shows on Netflix 

Cannabis can be healing 🌱🙏🏻

After my freshman year of college, I vowed I would never smoke pot again after a really bad trip. Fast forward 4 years later, I would never expect to have a  conversation with a relative about whether marijuana could help my pain. This family member had always viewed holistic approaches as beneficial to the whole self, and I have to admit that this person was right. 

In 2015, I got my medical marijuana card, as it's been legal in Massachusetts since 2012. I was really interested learning as much as I could about cannabis. I wanted to understand the laws and regulations, especially as it is still illegal on the federal level. I started reading books and watching documentaries, all discussing how marijuana can help numerous health issues both physically and mentally. The more that I learned, the better I could understand what strands of cannabis may be more beneficial for my symptoms. Its all about trial and error to figure out what is the best fit.

Cannabis has not only been beneficial for my physical health, but it has also been really helpful for my mental health. I have found it has helped with my anxiety, depression, and ADHD. When I use it, my mood is elivated, which has enhanced my creativity. Art has always been a big part of my life, and for a long time I stopped doing it all together due to depression. Since I started taking cannabis, I have been able to go back to doing what I loved; expressing myself. I finally got back into painting, and explored other forms of art, including writing. 

If it wasn't for this relative, I wouldn't have thought 

 marijuana could be used as a form of medication. In the last 2 years of having the medical marijuana card, I have learned so much on how holistic treatments in conjunction to western medicine can really help ones quality of life. Cannabis is a hot topic, and medical researchers are trying to learn as much as they can. The National Institute of Health awarded a federal grant for $3.8 million dollars over the next five years, to study chronic pain patients using opiods vs cannabis as pain management. Currently there are 29 states that have legalized medical marijuana, and there is hope that this number will increase within the next few years. 

Lack of sleep can really impact your emotional health

With RSD/CRPS, sleep does not exist. I have always struggled with sleep, but especially the last couple of days. Within a 48 hour span, I had only slept for 6 hours in total, which left me as an emotional wreck. I had just had my surgery scheduled for October 12th to have my achillies either lengthened or severed, and I did not fully process how soon it is actually occurring. There are many emotions I am feeling about this surgery, and I haven't fully processed them yet. I am still grieving in many ways, especially with the loss of independence and my mobility. Along with this news, I had a conversation with my NP regarding a conversation she had with my Dystonia specialist, and for some reason I broke down crying. I appreciate that my dystonia specialist reached out to my NP and my therapist, but I was also feeling very sensitive about the subject matter they were discussing. They did not have a bad discussion, but I interpreted it as they did. In the past, I have had doctors accuse me that my symptoms were all psychological, and I had a PTSD flash back of that was what was going on. I know my medical team is strong and finally working together, but this is something I am not use too. For a long time, I had to collaborate with my medical providers, as no one was working together. Because I am not use to this, I am always on guard trying to protect myself, as this is my coping mechanism. I am extremely sensitive talking about Dystonia with my providers, as I always feel that they think I am just a psych case. My symptoms of Dystonia does not match up to any specific form of Dystonia, which ultimately frustrates me as I still feel like providers view me as a psych case. With the limited sleep that I was on, I was even more sensitive, and become defensive. The PTSD that I have from the past is something I am tackling in therapy. There are many people that are afraid to talk about going to counseling, as they may feel others are judging them, or think of them differently. When you find the right therapist, you feel safe, and comfortable to work on difficult issues that are arising in your life.

I've learned that if you don't work on the difficult issues you may be going through, you will do more damage to yourself. It took a long time for me to push myself to go back into counseling, as I had bad experiences in the past. Even though I was in the mental health field, and went to school for counseling, I never wanted to enter counseling for myself. I wanted to help others more that I wanted to help myself. Once I was diagnosed with Dystonia, and was wheelchair bound, that was when I realized I needed help. There were many emotions that I was feeling: anger, sadness, frustration, and isolation are just some of the examples. When I first entered counseling, I was an anxious mess. I was going through a lot of stress, including emotional abuse. At this time I was being bounced around from specialist to specialist being told I was a psych case, and the only person I trusted was my therapist. She was the person to listen when I was ranting that my anxiety was through the roof, and she would help me figure out methods to help me cope. My therapist helped me find resources to help with medical expenses, along with helping me strategize how to approach the medical professionals. It got to a point that I looked forward going to counseling, as it was a third party that could help me rationalize different things that were occurring. One of the biggest things I learned from counseling is lack of sleep can impact the way you think and rationalize emotions. Because my sleep is limited, I can be sensitive to different subjects without realizing it, along with my mood can change without realizing it.