Debbie Barry

@debbiebarry
For the past 5 years I have been living with Avascular Necrosis, May-Thurner Syndrome, Trigeminal Neuralgia, Hypersensitivity Pneumonitis and most recently Ogilvie Syndrome. I also have POTS, a brain aneurysm , a paralyzed left leg and Venous Insufficiency. I try to remain as positive as I can despite having these conditions. I hope that maybe something I say or share about can help someone else.
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How do y’all deal with the anger(stemming from pain and anxiety)? #ChronicEpsteinBarrVirus #ComplexRegionalPainSyndrome #ChronicIllness #ChronicPain

I’m having more moments/days of anger and I am struggling to keep it contained. It’s also seeming to be consuming my thoughts and feelings more often than ever! I have been dealing with a lot of medical mysteries lately and life stress, which can’t always be avoided!

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Take a break, and answer a question... from a dog!

<p>Take a break, and answer a question... from a dog!</p>
252 people are talking about this
Community Voices

Take a break, and answer a question... from a dog!

<p>Take a break, and answer a question... from a dog!</p>
252 people are talking about this
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💩💩💩 Trouble #ogilviesyndrome

I have multiple heath issues I have been dealing with for the last 5 years.

1. Avascular Necrosis #AVN
2. May-Thurner Syndrome
3. Trigeminal Neuralgia
4. Hypersensitivity Pneumonitis

And most recently, Ogilvie Syndrome. For the last 2 months I have had no urge to 💩💩. I've been to the ER 3 times and hospitalized once. When I was admitted I had only had 1 BM in 4 & 1/2 weeks. And that one time happened when I was in the ER and had a soap-suds enema. I had a CT scan which showed no obstruction. I do take pain medication for AVN so they gave me a shot of Relistor to see if it would release the affects of the pain meds. It did nothing. So, they diagnosed me with Ogilvie Syndrome. They started me on Linzess, first 145 MG then 290mg. Did not help. Then Trulance, then Motegrity then Relistor. Still nothing. Even taking Mirilax every day. The only times I've had a BM is when drinking 2 bottles of Mag-Citrate. I still have no urge to go. They are trying one last medication, Symproic.
If anyone who has Ogilvie Syndrome can let me know what worked for you I would greatly appreciate it. I'm getting so frustrated and scared that I may never have that urge again.
Thanks 💜

Community Voices

How my life with chronic rare diseases, can be okay.

Prior to March 11th 2014 I lived a fairly normal life. I had gone to College, worked my whole life and had raised an amazing Son. Granted, I had some illnesses here and there. Bronchitis, surgery on my knee and some issues with Endometriomas. However, nothing could have prepared me for what was to come. In January 2014 I started having extreme pain in my left shoulder. The only way I could describe it was that it felt like someone was stabbing me with an ice pick. It was a pain that I had never felt before. One Doctor thought it was tendinitis. I wasn’t sure what it was, but I knew it wasn’t tendinitis. I asked the Doctor to do an MRI. About a week later the woman who answered the phone at my Doctors office casually mentioned that the MRI showed #AvascularNecrosis. When I told a friend, who was a nurse, that I found out what was wrong with my shoulder and that it was Avascular Necrosis, her response was “Oh God”. I had never heard of Avascular Necrosis so, needless to say, her reaction had me worried. I did some google research and what I found proved my friends reaction was appropriate.

Avascular Necrosis, or AVN, is a disease that causes the bones to die. This is due to a loss of blood supply. There are different things that can cause this to happen. In my case it was caused by multiple blood clotting factors and steroids. In fact, 8 months later, I was diagnosed with a rare clotting disorder called May-Thurner Syndrome. The other clotting factors, found after extensive blood work, were a high Factor V111, high Homocysteine, positive for MTHFR and PAI-1. I am on Coumaden for these issues. AVN typically affects the hips, shoulders and knees, but can affect any bone in the body. Some people get it in one joint, others in multiple joints. It is most easily diagnosed by getting an MRI. There are stages of this disease and the early stages don’t show up on an x-ray. Because the bones are “dying” the pain from AVN is extreme. It is documented that the pain from AVN is second only to #BoneCancer.

Shortly after being diagnosed with AVN I got a second opinion. That was with Dr Dubler who has been my Doctor ever since. On March 26th 2014 I had my first surgery called a Core Decompression, or CD for short. This is where the Doctor drills small holes into the bone. This releases pressure in the bone to help the pain. It’s also done to try and allow blood flow to start again. It is not a guarantee surgery but is the least invasive surgery for this disease. There are others such as bone grafting, stem cell surgery and joint replacement. Joint replacement is the only surgery that remove AVN from the affected joint. My Core Decompression surgery was a success. A week and a half later I was pain free! I was so happy that it worked and I was done with AVN. I was also so wrong. I currently have AVN in 15 joints and bones. I have had 4 Core Decompression surgeries, 1 Bone Graft and a left knee replacement. It has been a very painful 4 years. At first I cried every time a new joint was diagnosed. I was so scared about how this was going to affect my quality of life. Also, I didn’t know anyone who had Avascular Necrosis. Thankfully I found an amazing support group on Facebook. Now I know that I’m not alone. To clarify, my family and friends are extremely supportive and helpful. But the people in the support group truly know what I am going through. Can truly understand the pain this disease causes. We are all there to support each other and I would be lost without it. I’ve had people ask me how I stay so positive. I tell them this. I have AVN, there is nothing I can do to change that. The only thing I can control is how I react to it. I can be positive and have AVN or I can be negative and have AVN. Either way, I still have it. So, to the best of my ability, I try to stay as positive as I can.

Along with the AVN and May-Thurner Syndrome, I have had some other health issues over these past 4 years. In May of 2016 I was diagnosed with a small brain Aneurism. In June 2016 I started having excruciating pain on the left side of my face and head. The pain was worse than my AVN pain. I could barely keep my eye open. I didn’t want to talk and was having a hard time even eating. Three weeks later I was at the ER. I was diagnosed with #TrigeminalNeuralgia. It’s a rare disease that affects the nerves on one side of the head. Thankfully the medication they prescribed helped! I was so relieved that I was able to find something that helped. Pain from 3 diseases was just too much. In July 2016 I broke my foot, ankle and knee. I had surgery to put screws in my ankle.

As I previously said, a joint replacement is the only thing can can “cure” AVN in a given joint. In March 2017, after a difficult 2016, I was finally going to have my first joint replacement! I was so happy. It’s kind of sad to be so excited over having that type if surgery. I was having the surgery on my left knee. After waking up from the surgery the AVN pain was gone! 3 hours later I was walking with a walker around the perimeter of the floor. I was even able to do a couple stairs just holding the railings! I was able to do every exercise that PT wanted me to do. They said that they rarely saw someone who did as well as I did, after this type of surgery. On day 3 my Range of Motion was 105 degrees, which is almost unheard of. I was going home that day. They thought I would probably be walking unaided in about a month!

About an hour before I was being discharged, my friend Laurie and I had just finished a gourmet meal. The Hospital gives a gourmet meal to the patient and a guest. A PA came in to give me e discharge paperwork. He came over to the chair I was sitting in and asked to see me bend my knee. I did and for some reason he proceeded to shove my leg so hard that my body actually came out of the chair! My friend was horrified! My entire leg swelled, the pain was blinding, but the worst thing was that I was unable to lift my leg! Could not lift it even a millimeter off the floor. I did go home but my friend and the taxi driver had to lift my leg to get in the car. It took 2 people to get me in my house. It was horrible. The next morning the Visiting Nurse came. She took one look at me and had me go back to the Hospital. When my Doctor saw my leg, he was in shock. He had just seen me doing so well the day before. When PT came they were shocked as well. During the week I was there, they could not find where the damage was. My Doctor had that PA come and apologize to me and to “see what he did”. After I was discharged and went home I was having a very difficult time. I couldn’t walk without the walker, I couldn’t lift my leg and I was in so much pain. I just couldn’t believe that this happened. I had been doing so well and was so happy. 60 seconds and everything was changed. And not for the better. I had PT 3 times a week for 8 weeks. Then my insurance wouldn’t cover it anymore as I had made no progress. I had an EMG test. This test shows how the nerves and muscles are working. It showed severe nerve damage and no muscle activity from my hip to my toes. I had no reflexes and a dropped foot. I also had many MRIs to see if they could find anything that would help me. I saw specialists who could not figure out how to fix it. A year and a half has gone by. I still can’t walk, can’t lift my leg and have no reflexes is. After 4 EMGs, the Neurologist and my Orthopedic Doctor feel that it is permanent. So, I have had to adjust to my “new normal”. Thankfully I have wonderful friends and family who have helped me so much. I can’t leave the house by myself, can’t do my laundry or take out the trash and recycling. I can’t even get my mail. I do try and stay positive though. Sometimes it’s hard because I really don’t know what the future holds. So, I try to stay in the day.

My hope is, that by sharing my story, I may be able to help someone else who may be going through the same thing. Especially with rare diseases, it can be hard to find someone who understands.