Thank you for taking the time to check out my post and learn more about my journey! This post is a lengthy one! I wanted to get my whole story and my feelings out to share this – in hope to bring awareness, help other’s who have GBS or have a close person to them with it, and to help my healing process as well. Thank you again!
In October 2015, just 4 short months after getting married, I found myself in the aisle at Target with sharp chest pain and my right arm feeling numb. I went home and rested for the rest of the afternoon and hoped it would go away. The next day, I went to work and was still experiencing the same discomforts. I mentioned this to my coworkers and they noticed that I wasn’t looking like myself and my boss encouraged me to go to the clinic.
While in the waiting room, I began worrying what this could be. Once I got back into one of the rooms the nurse began examining me, to what seemed like a stroke examination from raising my arms, smiling, and saying a simple sentence among other exams. The doctor came in and did an EKG of my heart and also a chest x-ray. No signs of stroke, or any heart or lung issues. The EKG though seemed to have a slight irregular rhythm, but not life threatening. He recommended me seeing a cardiologist, to have a second opinion and follow up. Of course, questioning came up about me having any anxiety or depression, which I denied. I knew it was not a panic attack and was not making it up! Something just did not seem right, and I didn’t feel like myself!
Later that afternoon, I returned home and tried to rest some more. Instead, my chest was very uncomfortable and had a sharp and stabbing pain. I was still experiencing numbness and tingling in my arm as well. I called my husband, who was at work, and he got my mother-in-law to come pick me up and take me to the hospital. The ER took me in quickly and began assessing me, who also was doing another stroke examination. I had a repeat chest x-ray and EKG. Of course, everything came back fine. The doctor said he had no concerns with my EKG. I was sent home with no answers and was left feeling more worried. I tried to carry on with my week and still had chest discomfort as well as the numbness in my arms and now hands. I returned to the hospital a second time that week, of course all testing can back fine! This time the doctor mentioned it could be “Pleurisy”, where the lining in the lungs become inflamed. They recommended around the clock Ibuprofen and it should subside within the next week to two weeks. I was still very concerned but tried to take it easy and hoping that these symptoms would go away. Over the next few weeks, I noticed my symptoms starting to increase and new symptoms started happening! I had numbness and tingling in my fingers, hands, toes, and feet. It felt like when your feet or arms fall asleep and have that annoying tingling, and the pain of it began to get more apparent. My extremities also were very cold and would turn purple in color. It seemed as though there was not much circulation. I began keeping a log of my symptoms, taking pictures of anything that was not normal, and contemplated getting seen again by another doctor. Anyone I would share my symptoms and my concerns, looked at me like I was crazy or making it up!
Early November 2015, I finally got in to see a Cardiologist. I did an Echocardiogram, another EKG, and a Stress Test attempting to ‘run’ on treadmill. The treadmill test was a joke, I could barely walk quickly and not even jog! Then my left foot went numb and was dragging on the treadmill, so we stopped. The nurse looked at me like I was pretending to do that. I was so irritated. The Cardiologist did not see any red flags and I was referred to a Rheumatologist. At this point, it was difficult not to be frustrated. Going back and forth to doctors and feeling like they think I am crazy and making it up! I did a panel of blood work mid-November at the Rheumatologist and had some interesting results. Physically, the doctor did not suspect any conditions, even though I was experiencing numbness, tingling, etc. Blood work wise, the only thing that popped up was my ANA (Antinuclear Antibodies) results. I was positive, which could determine an auto-immune disease like MS or Lupus. The Rheumatologist said that when they tested it further and my Titer and Speckle Pattern, that it was not high enough to diagnose at that time, and encouraged to come back in 3 months for more testing. This left me even more lost. I just started crying, feeling hopeless and frustrated that nobody could help me or even understand how I felt.
The last stop for me was to see a Neurologist. My first appointment was in December 2015, 2 months in with daily symptoms, sharing my story and symptoms to the Neurologist. Midway through it, she stopped me and said “This sounds like Guillain Barre Syndrome or CIDP…”. I had no idea what those were. She also mentioned, it sounded like I got this from the Flu Shot! I received my 2nd ever Flu Shot in September 2015, just 3 weeks before symptoms began!!! It is very rare, and so is the syndrome. About 1 in 100,000 people get GBS. It can come from numerous things such as vaccinations, surgeries, respiratory or digestive infections, etc. As I mentioned to her my symptoms were getting progressively worse. My feet were so cold, purple, and very numb and tingly. My hands were so cold and numb and tingling. It started to move up my body to my legs. The Neurologist said you need to come in right away for an EMG Nerve Test and scheduled me 3 days later. She said that, if it is Guillain Barre, the symtptoms and effects can happen quickly and turn very bad.
Once I got into the car to head home with my husband, I started to Google ‘Guillain Barre Syndrome’ and after reading the first article, my heart sunk and I began to cry. Seeing people in wheelchairs, some paralyzed, some on a ventilator and even a tube! I thought I was just going to go into the doctor and she say, ‘Here you go, take this pill and it will be better within a week!’ But, that was not the case. I tried not to get too shaken up, but maybe it isn’t GBS…
I went in for my EMG Nerve Conduction Test and was VERY nervous. I made the mistake of ‘Googling’ that as well. The Neurologist went to perform the test, but my hands and feet were ice cold and were unable to pick up any electrical activity! The Neurologist had be move over to a room with a sink and turn on warm/hot water to put my hands in to warm up. She then wrapped them in towels and quickly moved back to the examination table to try again. HOLY COW! It was very uncomfortable and at times very painful when she would shock my nerves in my hands, arms, legs, and feet. Feels like you are getting electrocuted and zapped over and over. Thankfully my hubby, was there through all of this, in all of the doctor’s office and exam rooms. From the EMG, the neurologist confirmed this may be GBS due to my slow muscle activity, and showed the loss of individual nerve impulses due to the disease’s characteristic slowing of nerve responses. To get it officially diagnosed, I needed to do a Spinal Tap quickly as well.
Within a week, just 1 week before Christmas, I was at the hospital for my Spinal Tap. I was awake during the procedure, laying on my stomach as the doctor performed. I was given local anesthetic, and a needle was inserted between two lower (lumbar) vertebrae and a sample of cerebrospinal fluid is drawn. I was out a few days, as you need to lay completely flat on your back in order to not get a spinal headache, and needing another procedure. An elevated level of protein without an increase in the number of white blood cells in the fluid is characteristic of GBS. My protein levels were very high, thus clarifying the diagnosis of Guillain Barre Syndrome.
The plan was to begin a treatment plan on Monday, January 11th 2016. It was just 2 days after my birthday. I think back to my birthday now and think, “Wow, that was one of my last few days as a ‘normal’ person”. I was and still am in disbelief looking back at myself in this picture. It was like my last ‘hoorah’, and I didn’t even know it…
I was scheduled for IVIG (Intravenous Immunoglobin) Plasma Infusion. During IVIG, healthy immunoglobulin is taken from blood donors and given to you intravenously. The healthy antibodies block and destroy the harmful antibodies attacking your nerves. The doctor’s told me it would take time to repair any nerve damage that was done. There is no ‘black and white’ answers to how long or how I would feel. But, they mentioned maybe 4-6 months before repairing could take into effect.
I was very nervous and still thought this was a bad nightmare I was waiting to wake up from. Monday came, and I was working in the morning before my scheduled afternoon infusion. I didn’t feel like myself… I felt weak and exhausted. I went home for lunch, thankfully my husband was home. I sat at our kitchen table for lunch, and just leaned over and held my head. Derek told me to go lie down on the couch and put my feet up. All of the sudden, I felt something was wrong and began to panic. I went to move my arms and legs, and was unable to!!! I felt like i was trying SO hard to move and lean myself back up…but NONE of my body was moving!!! I began to yell my husband’s name and I started screaming and crying. Derek came to me and tried to help me lean myself up, and I couldn’t grab onto him! NOTHING WAS MOVING!!! He went to lift my legs, and I couldn’t even feel his touch! Derek immediately tried to call the Neurologist and also my primary doctor in town. My primary doctor was aware of all my doctor appointments and results through this process. Derek got a hold of him, and he said to go to the ER ASAP!!! We called my mom (who lives 2 hours away) to let her know, and she immediately left the city, south of where we live.
Derek had to carry me through the house and down all the stairs, out to the car. I couldn’t move! I couldn’t stand! WHAT WAS HAPPENING TO ME???! We got to the hospital in our town and Derek quickly loaded me in a wheelchair and brought me in. The ER knew I was coming since we called my primary doctor, he gave them the heads up. Once I quickly got checked in, took some quick vitals, and then I was sent up to the ICU. Once I arrived, everything was happening so quickly! Changed into hospital robe, weight check, temperature, blood pressure, etc. They were flying through everything to get me going. At this point, I still had complications moving my body at all. Everything hurt, stiff and tough to move, I was weak, and my body felt so heavy. Everything was flashing before me. Will I walk? Will I need to be in a wheelchair? What if my life is never the same?
Since we had planned prior for IVIG Infusions, the ICU and Pharmacy was able to get the IVIG Plasma and then plan was to get an infusion ASAP. My hubby, my in-laws, and my mother arrived right before I began. I remember the room being quiet… There were prayers silently being said in all of our heads… The nurse came in and was able to begin the infusion. I was to give the nurse a warning if I had any side effects, especially a headache. She was to come in and check my vitals and any effects multiple times through the infusion. They give the infusion slowly through an IV. Side effects tend to decrease the slower the infusion is given, and to increase the infusion slowly. I was about 5 minutes in, and began getting a sharp headache. It felt like a horrible burning hangover. I buzzed the nurse and she stopped the infusion. We had to wait a few minutes, and was given some medicine and then was given the ‘OK’ to proceed still slowly over a few hours at even slower rate. During this time, I could hear everyone in the room talking about Guillain Barre, insurance and coverage, setting up therapists to help me walk again, and so on… I was still in disbelief this was happening to me. I had a horrible anxious feeling in my chest. My head was still hurting, and just prayed and prayed for this all to be over.
My primary doctor came to visit and see how things were going after his clinic closed. He had me try and lift my legs and arms. I moved them barely an inch my legs off the hospital bed. I tried to raise my arms, and it felt like cinder blocks were weighing them down! Is this really happening to me?! I sat in complete frustration and just felt like crying..again. I was now on around the clock pain medicine and nausea medicine. I was still having a horrible migraine from my first IVIG treatment. The pain was intense with my head, so they gave me some medicine in hopes it would subside. After treatment, I tried to make myself comfortable as my husband, Derek and I tried to get some rest.
Day 2 came, and I got to move out of ICU to the 3rd floor. I was able to work with a Physical Therapist that morning on walking, slowly but surely I WAS WALKING! Learning to gain my strength back was very challenging. Walking from my hospital bed to the bathroom was like a miracle for me! It probably looked like I was moving in slow motion. It felt like my body was having to move through quick sand or cement! Every time I tried move or readjust my positioning, I could just feel the tears roll down my face. Why is this so hard?! It was so crazy to have my body be so weak and shaky. I am…was… a healthy and active 20-something year old. This shouldn’t be happening to me. I was to work with PT and OT 2 times a day. I was also to begin my second IVIG Plasma Treatment that evening. I was just feeling frustrated about my leg strength and walking, but was trying to be positive and forward to getting stronger and getting it over with!
Day 3 & 4 hit me like a ton of bricks. I was still having severe migraines and nausea as a side effect from the IVIG treatment. They gave me some more medicine for the headaches. I completed 3 IVIG treatments so far. Walking was my biggest goal. I was trying so hard to not let it get the best of me, but is so crazy how the previous week I was walking and now I had to fight my body to move. It still took a lot of effort and talking it through to just take a few steps. I was exhausted and just ready to be back to my “normal” self. Whatever my “normal” was. I kept telling myself, “I CAN and I WILL” get through this, just a matter of my body getting stronger and repairing itself. I was beyond thankful to have my handsome husband staying by my side 24/7 and being my extra nurse! He is the best caretaker whenever I need anything or my legs rubbed or exercised. He never left my side. My mom,who came from the city 2 hours away, to be here for Derek and I. She stayed with us for a little over a week to help with things at our home and with our puppy. I was sooo thankful to have such a good support system. Family and friends were calling and visiting. I was so thankful.
By day 5, I got to go home in the evening! I had on heated slippers, heat packs on my calves, and heated blankets. My feet were numb with no feeling and legs were cramping, but at least I got to go HOME!!! I got to be home over the next 2 days during the weekend, and I was suffering from horrible nausea and headaches. I would scream and cry in pain. I was taking medication but it was just masking the pain. I tried to push through till that Monday. They left a picc line in, so I would be ready for treatment on Monday. It felt sooo good to be home! Already, walking in the door, and overwhelming feeling came over me. I wanted to cry, but my heart raced in thought of the challenges I would have at home, even walking in the door up the steps.
That Monday, I checked into the treatment center in my town to receive IVIG. It would be infused over the next 6.5 hours to hopefully reduce side effects. By that evening, I was in the ER. I had a difficult time breathing on my own. I was still fighting the painful headaches and nausea.
They moved me up to a room from the ER, where I was previously the week before. I was hooked up to oxygen and was on around the clock pain medication and nausea medicine. I was able to put in 2 more IVIG treatments (5 total thus far). Come to find out, I got Aseptic Meningitis (a condition that causes the tissues covering your brain and spinal cord to become inflamed) from treatment. I was screaming and crying in pain from my headaches. In the hospital room, we could not have any lights on or have anyone talk very loud. My brain felt like a drill was going through it.
We decided to stop treatment, after being in and out of the hospital for 2 weeks. We decided it was time to let my body heal and repair, and hopefully catch up with the pain and make it more manageable. I was struggling with the migraines, weakness, numbness, tingling, but my walking was improving! Over the next week, my goal was to manage the pain and slowly wean off pain medications, rest, and do my therapy exercises that were given to me. I was still under observance of my primary doctor and neurologist, and I even managed to get another neurologist who was familiar and worked with patients who had Guillain Barre Syndrome. I was just happy to be home!
I needed around the clock assistance. I needed help ‘walking’, showering, eating at times, changing, someone driving me, running errands, etc. I was home bound, except for appointments. Doctor’s said it would be “months” to heal and repair. I had substantial amount of nerve damage, making day-to-day things VERY challenging. I was very weak and in a lot of pain 24/7.
Over the next 2 1/2 months, I was slowly but surely improving! I had horrible side effects from the IVIG and continued to suffer from painful migraines. I was on a large cocktails of medications. It was trial and error trying to figure out which were helping and which were not. I had to be an advocate for myself anytime something didn’t seem right. I was starting to get stronger and able to walk without assistance, it may have been slow walking but I was doing it!
In February, I struggled emotionally as well as physically. I was trying so hard to be positive. There was always a smile on my face that I hid behind. I felt like I was trapped in my own body. There were good days where I felt strong and making good strides, but then there were bad days where I took 10 steps back. GBS is such a gray area, where there is no definite answer how things would go, length of recovery, pain, etc. The worst and most annoying thing to hear was to be ‘patient’. I was in so much pain daily and the medications weren’t helping. It was still trial and error what would help. It’s a pain that no medicine can heal. But, I had to be ‘patient’. I pushed myself to walk, to be ‘normal’, to be positive. I was fighting because I wanted to be strong and have my life back!
March 30th, 2016 came and it was sad and disappointing. I was back at square 1. I wasn’t feeling like myself and my GBS symptoms were getting worse. I fought SO HARD to not be at this point ever again. I ended up in the ER in my town and was then transferred to the city, 2 hours south, to a hospital who could help someone like me.
What a whirlwind it had been. My world had been rocked and could’t even begin to explain the overwhelming emotions, fear, sadness, and pain that I had overcome. My conditioned had worsened and ended back up in the hospital again. After 4 EMG Nerve Tests where they shock my nerves, an acupuncture/needle reflux test, an MRI, and a Spinal Tap all in 1 day I received the horrible news. I had worked so hard and fought for months to not get to that point, but there I was. I was diagnosed with the chronic form of Guillain Barre Syndrome, CIDP (Chronic inflammatory demyelinating polyneuropathy). This meant a long term condition and getting treatments and therapy for me, but I was optimistic that it could, at times, go into remission.
I had a brand new team of doctors and neurologists, where I would be staying for a bit. The new doctor’s were wonderful and very knowledgeable with my condition. I was being very closely monitored, and this time I was getting the care I needed and felt like I was in great hands. We had discussions with my husband, family, neurologists, and pharmacists about what would be the next treatment option. It felt like I was sitting there, staring at the wall while my future flashed before me. It seemed like everyone talking around me was faint. Could I walk normal again? Will I be wheelchair bound? Can Derek and I have children? Will I ever work again? What would happen with the treatment option I choose?… the questions raced through my mind. After meeting with my team of doctors, we made the decision to do High-dose Methylprednisone Steroid Treatments this time. We chose a different treatment route, due to my horrible side effects previously with IVIG Plasma. There were bad side effects and potential damage with my bones with the steroids. The doctor mentioned rapid weight gain, but I shook that off. I just wanted to start! I was already 2 days into treatment, and it had been hell and painful but I was fighting through all of it. I would be doing 5 days straight of treatment, then 1 time a week for 4 weeks, and then every other week for 2 months and so on and so forth. It would be quite a journey with treatments and OT / PT but I was ready to fight back TWICE as hard!
Due to the side effects from treatment I was on all sorts of additional medicines and had all sorts of effects but was being closely monitored. I had added high blood pressure, high heart rate, insomnia, and high blood sugars so I was also being treated in those areas as well like glucose testing and getting insulin. I did’t sleep and was wired, but I was gonna beat this! I was so thankful to my angel of a husband and my family who shad stood by my side through it all. I honestly don’t know what I would do without all of their love and support.
After almost a week being in the hospital on the neurological floor, I finally got released! I did my 5 High-dose Methylprednisone Steroid Treatments while in the hospital of 1000mg each! There were some pros and cons but overall I was doing well! I had a reaction on the last day during treatment with a rash and bumps on my chest and face, but stopped treatments and was treated with Benadryl and carried on. I was still working on getting my leg and arms strength back. Everything was very slow moving, and it took time to build my strength and nerves back. It was so difficult just to climb out of bed and walk a few steps to the bathroom. It was very slow and painful. I was so weak. My legs and arms were weak, stiff, and cramping but was noticing some benefits of treatment all ready. I was still treating my CIDP with my medications and started some new ones, so it had been interesting to say the least. My medications were all trial and error again, seeing what worked. I would start my next weekly treatments the following Friday. I would have a routine schedule over the next few months. I was also working with OT and PT to work on my strength and mobility! I had a long road a head of me but was trying to have a positive outlook!
After being sent home from a week in the hospital and the reaction to the treatment, I found myself at my parent’s home itching my chest and back, feeling flushed, warmness and scratching in my throat, and at times having shallow breaths. I was worried to go to sleep and not wake up. I was nervous. My mom called the neurologist’s office and they encouraged me to go to the ER, in case it was an allergic reaction. We quickly left, and they got me into a triage room quick. They did all the necessary initial tests and EKG. The doctor came in and agreed it looked like an allergic reaction. When you have an allergic reaction, they give you Steroids… well the Steroids were what was causing the reaction! Instead, I was given 2 Benedryl and 1 Zantac tablets and had to wait patiently in the room. After being there for about an hour, most of the symptoms lessened.
Over the next week, I was behind on getting treatment. I had to go see an Allergist and do testing over the next week to see if I had an allergy to the steroids. The Allergist suggested that is is very rare to have an allergy to them. My family, husband, and I worried getting behind on the treatment plan and also worried if I was allergic to them, how would I proceed?! I needed the steroids to make any improvements! It was crucial to my condition to get treatment.
The worst was that I had these red bumps covering my chest, shoulders, back, and MY FACE! Every inch of my face was covered in red bumps! I also had gained weight sooo quickly that my face swelled up and looked like I had marshmallows in my cheeks! This was horrifying. Not only could I walk, but I had itchy bumps everywhere and had gained so much weight in 1 week!
After all the allergy testing, it was concluded that I did not have an anaphylaxis allergy, but a reaction to such high doses of the steroids. This was good news, I could proceed with treatment! I was 1 week behind but jumped back into treatment. I was still staying with my parents in the city, and would transition back home with Derek after 2 weeks. We agreed to continue to receive treatment in the city, and travel 2 hours there weekly and for future treatments. We felt more comfortable going to the hospital’s campus where there were specialists who worked with patients like me, in case anything else would pop up. It would be a lot on Derek and I with traveling so often, and financially things being put on hold while I was in this phase. It was the best choice for us though.
Medication was such a hassle and tough routine to get into. Every 2-4 hours I had to take something. It was still trial and error of what was working. Not only was I getting IV Infusions but had to stay on top of my medicines. If I was off by an hour or skipped a dose, my body was paying for it. I needed everything in order to function. I couldn’t believe how much I was taking and was in my system! Most of the medications were for nerve pain, muscle relaxers, medicines to help me sleep, etc. I hoped it was temporary.
*I have even more added on now…*
After 3 weeks, I finally got to go back 2 hours north, to our home with my hubby. I was anxious of everything I went through and what was ahead. I had my 1st Home Health appointments at our house with a Physical Therapist and an Occupational Therapist. They would be coming 2 times a week to our house, each. I was VERY weak and had a hard time doing anything and not for very long. It started off with pinching exercises with my fingers, rolling thera-putty, stretching with therabands and other exercises to increase my fine motor skills. Just getting out of bed and walking through the house was challenging and almost impossible. I had a hard time even holding my phone to text, and it would be painful! Everything I did hurt. Doing treatment and home therapy was crucial to make any improvements. I couldn’t sit all day and hope it would get better, I had to actively push myself to do it! I was exhausted and beaten down. I wanted to give up.
We have a split level home, so stairs were a nightmare.
There were 7 stairs I had to climb, to get to our living room and back to the bathroom. Every time I had to go to the bathroom or go sit in the living room, I had to endure the stairs. My family and everyone suggested for me just to stay in my room and watch tv, and only have a few steps to the bathroom. I didn’t. Those stairs were the most challenging thing I did every day, but it was good therapy! I was taking pry 3 minutes to just get up them, but I was moving! I needed assistance with everything I did – walking, stairs, changing my clothes, getting into and out of the shower, needing a shower chair, etc. I was so weak and shaky. I still couldn’t believe this was my life. It was a horrible nightmare I wanted to wake up from.
There were 7 stairs I had to climb, to get to our living room and back to the bathroom. Every time I had to go to the bathroom or go sit in the living room, I had to endure the stairs. My family and everyone suggested for me just to stay in my room and watch tv, and only have a few steps to the bathroom. I didn’t. Those stairs were the most challenging thing I did every day, but it was good therapy! I was taking pry 3 minutes to just get up them, but I was moving! I needed assistance with everything I did – walking, stairs, changing my clothes, getting into and out of the shower, needing a shower chair, etc. I was so weak and shaky. I still couldn’t believe this was my life. It was a horrible nightmare I wanted to wake up from.
Week after week, I was slowly getting stronger. I had some good days and bad days. Neuropathy was getting the best of me. I could move around in the morning, and by the evening I was like an old lady, hunched over, and taking small steps. It was hard not to be down. EVERYTHING I DID HURT! EVERYTHING! I had Physical Therapy and Occupational Therapy still multiple times a week at our house. I was so thankful we were able to have it set up with Home Health, so that I had energy to exercise instead of using my energy to go up and down stairs to leave the house and walk into the building. I would have spent it all just getting to therapy. Therapy was pushing me to my limits but I was trying my hardest to get stronger. I couldn’t believe how difficult everything was. I could have never imagined. I had different exercises to help my fingers pinch and have better fine motor skills. I had difficulty opening a water bottle, feeding myself, or grabbing items like coins or bobby pins. I remember one of my Occupational Therapy goals was “to eat a meal without taking breaks”… I had a hard time feeding myself, it was painful and was weak to hold a fork or spoon. Going down the stairs to leave the house was a challenge, texting on my phone was a challenge, feeding myself was a challenge. Conserving my energy was also key. Everything I did, affected me at that point and later. If I pushed myself, I was set back later. I would feel like I ran a marathon and then went to the gym and lifted weights all day. My body felt so heavy and weak at the same time. It is just indescribable how much pain I was in and how weak I was. I just felt like I was trapped in my own body and was fighting so hard!!! Physically and emotionally I was drained.
I had to start sucking up that I needed to use a wheelchair if I left the house. It sounds like an ego thing not wanting to be in a wheelchair, but I was so self conscious. I am not sure if it meant I needed help, I was giving up, or what… I did not want to sit in it. I was exercising and stretching daily to help me move as best I could. Will it always be this hard and painful? It felt like I was just getting by day after day. I was exhausted and in pain.
I was at home all day every day. I was thankful to have my hubby by my side, assisting me! He became the caretaker and it was heartbreaking. I could have never imagined how amazing he was with me and doing everything and anything for me. Not only was he helping my physical needs moving and such, but emotionally he was so supportive. I would cry and cry and he would try and lift me up with being positive. He would rub my feet and legs, hug and kiss me often, and help with anything! We were definitely testing our vows we made just months before, “in sickness and health” and at such a young age and early in our marriage. I am still in disbelief of how well my hubby has taken this all on. He was taking care of me full time, working, and traveling to and from treatment with me. He was always by my side at treatments. He became quite the chef since I was out of commission, and I think he was happy to cook without me taking over!
Having to have someone help you and take care of you can be sad, and it does make you feel guilty. It was hard to ask for help. I tried to be strong and do things myself, but was comforting having him by my side. I just felt trapped in my own body and was fighting to do anything. It takes a toll emotionally going through what I did, but then being home and needing help worsened how I felt too. I was back home with Derek and my family was 2 hours away. I started feeling sad and depressed at times. I was a happy and perky girl, and I felt like I was loosing her. On social media and in person, I tried to look brave and smiling. Inside, I was falling apart…
As the months went on, I was making improvements! I tried to not be so hard on myself and remind myself of what I had accomplished. I finally got to practice driving with Derek around our neighborhood. I was concerned of my arms and legs getting tired, but it went well. Stopping at stop lights for long periods of waiting hurt my calves, but I knew I would start getting more strength back. Finally, I got to start driving myself around town and to work. It was great to get some independence back!
Along with all the crazy side effects from the steroids, the weight gain was really affecting me. Physically, my legs felt so heavy and moving around was difficult. I was so swollen and had terrible edema on my legs. Compression socks and manual massaging was essential. Emotionally, it was sooo hard. I was lucky prior to my diagnosis, not ever gaining weight and eating whatever I wanted. Now, I was gaining on average 7 pounds a month!!!
*this is hard to show and to be honest about*
I know my appearance and weight gain should not have been my worries, and I should focus on something else. Which I have! I am just sharing some feelings… I think, unless you can walk in someone else shoes or feel the way that they do, it is easier to say from the outside. Let’s get real, anyone in my position would feel self-conscious and down! (this is really hard to share the number) I am at 68# + weight gain and still going!!! Now tell me, how you would feel The first 25# I tried to just shake it off, now it’s mortifying. Nothing in my drawers or closet fits. I have had to make 3 different stages of buying new clothes, and now I have just given up. Now I wear some of the hubby’s clothes and t-shirts, even steal some from my dad. Physically and emotionally, it is difficult having my diagnosis. Adding more on is challenging. I am trying to embrace this ‘treatment’ body, but it’s hard! The heaviness, stretch marks, swelling, and pain takes a toll on you! I am trying to get stronger and build muscle, but the weight is weighing me down!
There are times I embrace the curves I now have, booty and boobs… but then I cry seeing myself in the mirror or in pictures. Sometimes it hits you and you get in your own head, and wonder what people think when they see you or how much you have changed. It makes it even more difficult hearing from family or friends saying “You look so different!” and “Your face is much rounder!” or “I can see the weight change on you”. It hurts! The hardest part is, I can’t do anything about it! Each and every treatment adds more and more weight on, I have no control… I hope this is something I’ll look back on myself and say, “Wow!” look at the difference and improvement in myself and think, “You did it girl!” and “You are back!” I just want my life and my body back…
During this time, my work had been so understanding. This was an understatement! I was gone for over 2 months, and my boss was calling and checking in on me. It was huge to have their support and they told me to take care of myself and to get healthy – not worrying about work. I felt so guilty being gone. Having an understanding boss and work place makes a big deal. I missed it and I looked forward to finally be returning soon.
Over the next few months, I was getting stronger and was able to do some things independently. I was finally up and moving around the house, trying to take one 1 or 2 chores daily. I wanted to have purpose, being helpful at home and not feeling guilty laying around. I know rest is crucial during this time, but you can only scroll through Facebook and watch so many tv shows! I remember making brownies one day, my arms ached as I mixed and mixed. I stopped, just looking at the brownie mix in tears… little things like that I took for granted. Here I am struggling to make a boxed mix of brownies!
By the fall, I was working part time Monday – Thursday in the mornings till lunch. I had PT, OT, or pool therapy one of them everyday in the afternoons. Depending on the weekend I would have treatment 2 hours away in the city or was trying to attend family or friend things. I was going to my therapy appointments outpatient and really working hard! I was exhausted doing more than I ever had! My therapy appointments were an hour long, and you bet my curvy booty was pushing myself and not stopping during the visit! I was very sore and down for a few days after all of this. It felt like I was constantly playing catch up with my body.
Over the holidays, both my family and Derek’s surprised me with “Team Elissa” shirts they were all wearing! Having their support means more than they will ever know! Being around them gives me a boost and cheers me up. I love our families! Now family and friends are joining in on the “Team Elissa” Train!
I am not going to lie, or try and act courageous with this paragraph. This (excuse the language) shit suuuuccckkksss! I have really been back and forth with my emotions and thoughts. Commercials of people in wheelchairs, mom and baby commercials, elderly people commercials, really anything that flashes before me of a future makes me cry instantly. Some days I am driving home from work or therapy, and I just break down. Learning to cope with this life changing event has been THE MOST challenging I have ever endured… but I am doing it! I try and act brave and positive, while inside I’m dying. I feel like I am drowning and it’s hard to breathe. I have come to terms with the anxiety and depressions I have developed from this life changing event! I am honest, I got those! But, I am learning to cope. Is it crying in the shower, is it sitting in silence as my mind races, is it venting to my family-husband-or rare friends, or maybe… it’s writing this blog- getting it all out there and express myself. I don’t like people seeing me be vulnerable by crying, breaking down, using my wheelchair, and asking for help. It’s easier to respond to “How are you?” with a “Hanging in there!”… do I really say how I feel and what’s going on in my mind? Some days, I look at myself and the mirror and wonder who is this girl… Physically I look so different, emotionally looking at my eyes I can see the pain behind them…I take a deep deeeep breath and say to myself “You got this! Pull it together!” I don’t think I will never have moments like these, I will. I may endure even harder times as my live progresses! There is no doubt I think about myself as a mother, a grandma, etc. How will I do it?! The daily pain, numbness, tingling, aching…the list goes on. My body is not listening to me, and I have some bad days – more than usual. But I also have good days! I am more independent, having purpose, pushing through and getting stronger! I don’t get to do much. It is usually work, therapy, doctor appointments or treatments, and sitting at home recovering. But I am learning along the way how to push through and take it day by day. I can and I will do this! I can’t believe the strength I had, until this happened to me! “Brave” has been my word and saying since I got sick. I have learned to be patient as best I can, and trust this journey. I’ve learned to slap on a smile and try to be positive. I can do this!
Here I am, months later in the Spring… I made it to my last scheduled treatment! 1 year, 27 treatments, 16,000 mg of Steroids, over 100 PT & OT sessions, and 70lbs heavier – I finally freaking made it!!! I have come so far this last year, and I know I have obstacles ahead. I have my evaluation within the next week with my neurologist and am prepared I may need a few maintenance treatments, but am feeling hopeful! This was THE MOST challenging year of my life, I could have never imagined this would be my life. I am amazed how much strength I managed to have and bring out of me! I am still working on my mobility, endurance, muscle strength, etc. daily at therapy but I am walking!!! The daily pain sucks but I try and push through. I could definitely not have done this alone. My sweet hubby has been by my side every day, every treatment, every doctor’s appointments, carrying me, pushing me in wheelchairs, taking care of me everyday on top of work, and always cheering me on. I am so thankful for him!!! You could have never imagined the first 2 years of marriage to go this way, and I am so blessed he has been the strength for both of us! Our families have been through it too! They have shown so much love and support helping us and I am so grateful! All of our friends and cheerleaders, helped keep me positive and going! I did it guys! I freaking did it!!!
The plan is to have 1, possibly 2, maintenance treatments that are half my dose and see how my body and syndrome reacts and go from there! I continue to go Physical Therapy and Occupational Therapy 2-3 times a week, do the treatments, stay on top of my medications, and stay positive as I push through!!!
Come along with me, and see what is yet to come!
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Elissa has became a dear friend of mine. I'm so honored she let me share her story for The Faces of Guillain Barre.
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