Some thoughts on life

Some random thoughts on my life...type when I can keep my eyes open despite the fatigue...fight the pain with meditation until the hydrocodone can drain it from me temporarily...numb burning feet...muscles spasming in my legs, arms, back, neck...leaking bile...soaked clothing waking me in the night...waves of nausea nearly constant...try to meditate and focus away from my body...smelling a piece of bread or some fresh cooking veggies...but I can't take fighting the urge so I eat some to satisfy it...punishment with pain, nausea, vomiting...it all comes back out...tried jejunal tube feeding last night...it came out my stomach tube...my gut is working backwards...see my beautiful boy enjoying toys and bugs and clouds...wondering if I will be here to see him become a man...love of being a mother keeps me going...insurance lost so the bills pile up and I wait for more loans...medigap could have helped but the papers continue to say denied...gastroparesis...IV nutrition therapy...dystonia...fibromyalgia...written out in case I don't already remember why...working when I can...wondering if graduation could or even should become a reality...what will I do next...friends caring, sharing, giving...family loving, helping, never leaving but fearing...waiting...wondering...searching for my peace and freedom from suffering.

The photo is of my son playing in the surf on our recent summer trip to South Carolina. I loved watching him play in the waves.

You do what you have to

Some people say they are proud of me or they don't know how I do it. Living with dystonia, gastroparesis and chronic pain is not easy, but I do it because I have to. I could lay around at home taking my SSDI payments and watching soap operas all day, but for me that would not be living. It would be a depressing crappy life that I don't want. So I am doing what I have to in order to live the life I want. I desire peace, happiness and joy in life. To achieve that I must take my life and suffering as it comes. I do my best to endure the suffering and enjoy each minute of happiness and success that I find in each day. I try to live in the moment. It is the only way to survive and live life to the fullest.

Yesterday I had a dystonic attack at work in the lab. Another graduate student was using a tone to train his mice that had a very high frequency and triggered my attack. I have had mild attacks at work before, but never a full body severe attack like I had yesterday. As usual I had to convince people not to call the paramedics. Attacks are very scary to people who see them because they look like seizures only I am conscious. I managed to calm everyone down and get some medications to help get the dystonia under control. We also stopped the tone of course. Unfortunately once an attack is triggered it usually takes a while for me to recover. Luckily I was doing a lot better after about a half hour or so. I think I am just a bit more prone to having attacks since my recent problems with the gastroparesis. My body is just stressed a bit and can't handle as much as before I had this flare up of the tummy troubles.

Today I am feeling better and I'm taking some time to read and work on a paper I am trying to get published. Life goes on and for the time being I am managing fairly well. Peace to all, Jen

The picture is my son's first snowman. He was so proud.

Remembering Prof. Walker

A good friend and professor of mine, Professor J Michael Walker, passed away recently. He died in his apartment of either a stroke or heart attack. He was only 57 years old and we are all going to miss him dearly. He was the Chair of the Program in Neuroscience and the Gill Center Chair of Neuroscience. He was very passionate about his research and cared deeply about his students and teaching. I really enjoyed taking his seminar class on pain last Spring and we had many conversations in his office. We disscussed science and research most of the time, but he also always asked about my health and my family. He studied chronic pain and had a better understanding of how difficult it is to live with chronic pain because of his research and past relationships with family and friends dealing with pain. He knew that I have really struggled to get to where I am today and he appreciated my stubborness. I will never forget his benevolence and the encouragement he gave as I have pursued my Ph.D. We have lost a remarkable researcher, colleague and friend.

Pain

My biggest problem lately has been pain. I have chronic abdominal pain, pain at my g-tube site and dystonia pain because of the constant muscle spasms. I took Ultram for a short period and found that it aggravated the dystonia and caused the spasms in my back to get more severe. I started back on Darvocet which works Ok but just is not strong enough for the stomach pain. Last night I tried the Lortab again. It really helps the pain, but it makes me woozy and knocks me out. It is not a good option for school but I feel like I don't have a choice on some days. Pain can be so frustrating especially as a student. I am hanging in here and seem to be managing in spite of the pain. I will get by as I always do, but right now each day is a struggle for me.

Lazy Day

It's a lazy day. Warm and overcast outside. Me...inside on the couch with stomach pain and muscle spasms. The heating pad and hard candy are comforting and I don't want to move. My son demands "Mommy get up...Mommy play with me". Everytime I stand up or breathe deeply the spasms clench in my abdomen and my back. It has been this way since the surgeries and I wonder if I will ever recover fully. Dystonia seems to have spread into areas affected by the surgeries. I am resting today so that I might be able to go to a New Year's party tomorrow night. On days like today I wonder how will I ever be able to go back to work at the lab?

I am taking about 9 medications right now and it seems like it is always time to take pills. My GI doc has also asked me to count calories. Greg bought me a book so I can look up the foods, but I eat so little at a time that it always becomes a guessing game. Next week the dietician who works with the pharmacist to mix my TPN wants to know everything that I eat for the week. I will have to be more diligent about describing what I'm eating. I keep track of the calories and medications in a notebook. Like a person with diabetes, I also have to periodically check my blood sugar because I am easy to become hyoglycemic during the day and can get hyperglycemic at night during TPN administration. So far I have only had problems with low blood sugar rather than high. If I stop the TPN and don't eat for a while my sugar drops and I have to eat or take some glucose.

So, even on a lazy day life revolves around gastroparesis and dystonia. I feel a need to change this and focus again on school and family. It is a constant battle with these diseases. Getting back to the lab and doing dissertation research will help me let go and actively live with chronic illness. I plan to start working again next week. My son also does a wonderful job at distracting me from the pain. When I gasp from spasms or pain he brings me his stuffed animals and blanket and says..."Here Mommy...It be Okay...I love you!"

P.S. Creme Savers are awesome and make gastroparetic life worth living.

Back to the hospital

I had to return to the hospital this week. I have had uncontrollable vomiting, pain and inability to do j-tube feedings without pain and vomiting. The doctor started me on TPN and I have felt a lot better since they started it. After a week I am still unable to eat and having trouble with tube feedings. I will likely go home and use the TPN at night through my PICC line. I am a bit worried about the PICC. If it gets infected I could get sepsis. We will have to be very careful and clean with the lines. We will also start the drug domperidone tomorrow. It is a standard drug for gastroparesis if you can't handle the other drugs like Reglan (drugs that can cause dystonia). The domperidone is still risky for worsening dystonia, but much less likely because it is known not to cross the blood brain barrier. It is not FDA approved so we have to get it from Canada but it is really the only hope for my stomach at this point.

The picture is of my "all-in-one" TPN IV. It has kept me alive for the last two months.

Home and Glad to be Alive

Well, it has been an eventful month to say the least. I have been home for about a week now and I'm finally feeling well enough to post.

I had surgery in Bloomington to put in a G-tube and a J-tube with ileostomy in the middle of October. Unfortunately there were complications of surgery and I had internal bleeding on my spleen and needed some blood transfusions. Eventually the doctors decided to send me up to Indiana University Hospital in Indianapolis for better care. I was flown by the life flight helicopter in the evening and Greg drove up to meet me in the intensive care unit at IU Med. I was very sick. After several days in the ICU the doctors decided to do surgery to repair my G-tube which had pulled out causing an infection in my abdomen and clean up some of the internal bleeding. My tummy was so huge at this point. I felt and looked like I was 9 months pregnant. After the second surgery I looked better and began to finally recover. After the surgery I had pretty bad edema, tachycardia and trouble maintaining my oxygen levels so everyone was pretty worried about me. I slowly began to do better and they were able to move me out of ICU. I was in the ICU for several days after the surgery and then moved to the progressive medical intensive care unit where I spent the rest of my time at IU Med. It has been a painful and difficult recovery but I am finally home.

I am still having a lot of pain and I'm taking Lortab and Oxycodone which help a bit. They are fairly strong drugs and I hope to get off of them soon so that I can get my body back to "normal". I still can not eat and am getting nutrition from J-tube feedings every night. The feedings are painful for my intestines and I get very bloated, but I'm told my body will adjust. I just started eating some baby food yesterday and I can drink mint tea. This is a big accomplishment after vomiting and stomach pain for the first several days I was home.

Gastroparesis is a difficult illness to deal with and has almost taken my life. I am lucky to be here and hopefully my tummy will improve as I recover and I will be able to eat more. I am so glad to be home with my son and hubby. We missed each other so much. I am finally on the road to recovery and I know everything will be okay. Once again I am trying to live in the moment. It is difficult with the pain, but I am doing better each day and I know I will be back to working on my dissertation before long.

The picture is of a visit from my son while I was in the hospital.

Tubes here Tubes there Tubes everywhere

I have been in the hospital now for 10 days. It is getting to be a long stay. I have several tubes and will be gettting an exciting new one soon. So far I have my PICC line with two tubes (one for normal IV and one for TPN). I have also been catheterized so I have a tube coming out. The exciting news is that on Friday I will have surgery to place a gastrojejunostomy tube for feeding. I can no longer eat or drink without getting sick so the tube will allow me to bypass my stomach for feedings. I am feeling sick a lot of the time and I am hoping that resting my tummy will help. It is a hard time for me right now and I'm not sure where things will go from here, but I'm hanging on. I will post again after surgery.

A plan of attack

I'm on pain killers so I'm apologizing in advance if my post is awkward. Here's the scoop. I have severe gastroparesis with nausea, vomiting and pain. I can not eat or drink very well at this point so they will put a PICC line in tomorrow so that I can get TPN (total parenteral nutrition) food through my veins.

After they get me to feeling a little better we are probably going to try a Sinemet (levodopa) trial for dystonia since I have never tried it and it might also help with the vomiting if it works. I am praying for a miracle with this drug.

If that doesn't help we will try domperidone. Domperidone is a drug that blocks dopamine receptors but does not cross the blood brain barrier so theoretically should not affect the dystonia. However, there are still rare reports of dystonic reaction with this drug so I will have to be monitored closely.

As a final option I may have surgery to implant a gastric pacer. It is similar to DBS only it is for your tummy. The electrical pulses cause the stomach muscles to contract in the proper manner eliminating the spasms that are causing me pain and vomiting.
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So that is the plan for me right now. I'm just hoping that the plan works so that I can get back to my dissertation. Wish me luck and send some prayers this way.
Love and peace to all!

Just Hanging On

I haven't posted in a while. Mostly on account of my health and an extremely busy research schedule. I'm taking one day at a time, living in the moment and not finding much time to sit down and write or have much time to myself. Often once I get home from the lab it's all I can do to take care of my son, get him to bed and then crash. My husband does a remarkable job parenting during the day and working nights part time so he often feels the same way I do. The dissertation is coming along and I am always excited about all my projects and new research avenues. It takes time and I feel that I am a long way from being done.

Lately my GI problems have been worsening and this certainly isn't helping me stay on top of everything. I finally saw a gastroenterologist. He is a great doctor and very patient and understanding with me. I am grateful to have had some compassionate and concerned physicians while living here. I certainly can't say that about all my past experiences with the medical profession. There are some different possible problems that could be causing my symptoms. I have been previously diagnosed with gastroparesis, but I am also being evaluated for peptic ulcers likely caused by NSAIDS and/or sphincter of oddi dysfunction. I will have some tests at the hospital over the next few weeks. I am hoping for the ulcer because it is the most easily treatable and I'm fairly miserable at this point. Zofran is taking away the nausea to some degree but I think if I have to keep dealing with the pain I may start wasting away. I have lost over 10 pounds in the last two months already.

One thing that I have learned is that eveything in life comes and goes. There will always be good days and bad. If I can keep myself grounded and living in the moment things will work out. It also helps me to remember that it could always be worse than it is. So for today I'm just hanging on.

Dystonia and TD Awareness

This week is dystonia awareness week. So far I have given away nearly 50 dystonia magnets from Care 4 Dystonia and several dystonia ribbons and pamphlets from the Dystonia Medical Research Foundation. I have also been sharing the film, "Twisted", with some of my friends. I am always curious as to why there are so many people who haven't heard of dystonia when there are nearly 500,000 people living with dystonia in North America alone. In addition, there are thousands of people living with tardive dyskinesia (TD) and drug-induced movement disorders that are not even included in this number. We need to continue to raise awareness.

Many people with chronic psychiatric disabilities or developemental disabilites develop tardive dyskinesia from neuroleptic medications. Have you ever observed a person with a disability who is pacing, rocking, making bizzare movements or faces? This is tardive dyskinesia. It is not because of the person's disability...it is a disabling movement disorder associated with the medications they have been prescribed. A friend of mine with TD started a great website for people with TD to meet, post and learn more about living with TD.

As for my TD/dystonia...I am lucky that it isn't severe dyskinesia like a lot of people with TD have and like I dealt with in the beginning. Dystonia has been treating me a bit better the last week or so. I am now up to 60 mg of baclofen per day. I also take ativan and naproxen. I am in the process of trying to find a better pain killer as naproxen has given me ulcers in the past and doesn't work very well for the severe pain in my left foot and my neck. My doc prescribed Ultram but I have decided not to use it because some of my friends with dystonia have had dystonic attacks associated with it. This is probably because it has antidepressant properties (norepinephrine reuptake inhibition). Antidepressants can also cause or worsen dystonia but typically are not as risky as the neuroleptics that directly block dopamine receptors. I have used Darvocet for dystonia pain in the past and I think I can probably tolerate it best compared to other opiates, like morphine, which leave me with severe cognitive problems, dizzy, vomiting and talking nonsense. Not good side effects for a Ph.D. candidate. I will head back to the doc in a month or so and I finally got an appointment with my neurologist albeit I have to wait until September. Crazy.

In the meantime life goes on. This weekend my little brother will be coming to visit. I miss him so much and can't wait to give him a big hug. He is an emergency room nurse and is a very busy guy. I don't get to see him enough. I will have to give him some dystonia awareness magnets to share with his nurse friends. We are looking forward to spending the weekend together.

The picture is of my favorite flowers...petunias. I took the picture after we planted them earlier this Spring.