Tag Archive | lethargic

Another day

So thankful to be alive another day. I only wish I didn’t have to live in pain all the time. Even with pain meds I can’t control the pain. Living with a spinal cord injury is not what I planned for. Nobody plans for this. Who would want to wake up everyday with a pain level of 5+? Who would want to find it difficult to even stand or walk? I realize that there are those who can’t even walk. I am thankful that I at least am able to walk with a walker and I am working on improving my ability by going to physical therapy three times a week.

Even so the questions keep coming. When is it my turn to wake up not hurting? Will I ever get a break from the pain? Will my legs ever get better? Will I ever get feeling back in my right leg? Will my proprioception ever get better? When do I get to run and play with my grandchildren or will I ever get to kick a ball with them? These are just a few of the questions that run through my head daily and sometimes several times a day.

Some days it is hard to deal with it at all. Just getting up and taking a shower takes all I have sometimes. First, just getting undressed is extremely painful. Taking my shirt off feels like the skin on my back is being sliced open by sharp pieces of foil. Next, the water that should be refreshing feels like spiked fireballs hitting my skin.Then drying off feels like being my skin being dried off by sandpaper. So you can only imagine how hard it is for me to put clothes on. I put on my Lidocaine pain patches first which is a not an easy task. I have to balance myself and use both hands to apply the patches to my back in the areas where the burning and pain come from.  Often it takes several tries to get them on correctly, on days when my husband is home he helps me. This task alone causes extra pain, but eventually the patches help to reduce the pain some by numbing the area some.

I hate having to take so many medications. I take Baclofen 20 mg three times a day to help reduce the spasms in my back and legs, Gabapectin/Lyrica ( changing  meds slowly), OxyContin 30 mg every 8 hrs., and Oxycodone 15 mg every 4 hrs as needed for break-through pain.  I also have to take Senna 2 tabs every morning along with Miralax and Metamucil to help keep myself from getting constipated as taking all the narcotics slows my bowls done. Even so, my pain is often not controlled well. This makes life  difficult and causes me not to be able to do many of the things I like to do.

Getting out with family and friends is very difficult. Most people don’t understand the amount of discomfort I am in nor do they understand how to be around me. Yes, I need help with some things but not everything. People tend to want to help by treating like I am incapable of doing anything. For example,  I can walk with a walker slowly, but I don’t need to be held like I am going to fall over. I can also walk up and down stairs fairly well and don’t have be held up. But when I need to stop and rest, I need to stop and rest not be treated like I am falling over or I am about to die. What people forget is that doing as much as I can for myself is important. It helps me recover and feel a sense of accomplishment especially since I have lost the ability to do so many things. Feeling like I have value is important to recovery. I only wish those around me understood that.

My hope is that people who read this will understand that if they or someone they know is going through anything similar that they are not alone and that are others that understand what they are going through. Whether it be pain or loss of function or both, we still have value. We still want to be treated like we count not like we are fragile and incapable of contributing. Yes, we may need more time to complete a task, but give us the chance and if we need help we will ask for it.

 

 

Helping a child fighting ALL Leukemia- the power of prayer

Learning to cope with a child (grandchild) who is fighting Acute lymphoblastic leukemia (ALL), has not been an easy task. Andrew Joseph Bay who is now three years old was diagnosed with leukemia in July 2013. His little body has too many lymphoblasts in the white blood cells. Malignant, underdeveloped white blood cells constantly reproduce causing overproduction of these bad cells in the bone marrow. A.L.L. causes damage crowding out normal cells in the bone marrow. It often spreads to other organs and can cause death. Acute lymphoblastic leukemia is most common in childhood with a peak incidence at 2–5 years of age, and another peak in old age. In A.J.’s cause he began having severe stomach pain and unexplained anemia at the age of almost three.

It took the doctors several week and many trips to the urgent care to get a diagnosis. AJ kept complaining his stomach hurt. First, the doctor told mom it was just a virus and to take him home and it would pass, Next, visit they decided to draw some blood. This time they decided that AJ was anemic. They told his parents again to take him home and begin to give him iron.

After another, week passed AJ began to become very pale and did not want to eat nor play. His parents decided to take him back to urgent care. This time mom told them they needed to do more tests as this behavior was not normal and there was something really wrong. The doctors appeased mom and drew more labs. They sent the family home and told them to continue to give the little guy iron and watch him. AJ was not improving.

A few days later on a Tuesday in mid-July his mother received a call at work. They told her she needed to go home and get AJ and bring him to the Children’s Hospital at Loma Linda University Medical Center immediately because they needed to admit him as they believed he had Leukemia. By 6 pm that evening it was confirmed little AJ had ALL leukemia.

AJ spent the next two weeks in the hospital having tests run and beginning to receive chemo therapy. They had to draw blood every few hours for testing. The took his vitals every two hours so sleeping well was out of the question. AN adult had to be present with his at all times so mom, dad, and grandparents had to all take time off work to help.

Watching this little boy go from a rambunctious two-year old to being lethargic and lifeless was heart wrenching. He did not want to do much of anything except be held and watch movies. The little moments of a smile or “I want to play with my truck,” were cherished and still are cherished. During the first two weeks AJ had to often had be restrained by the medical staff as well as family so that his blood could be drawn, IV’s could be placed and changed, or to give him his oral medications.Trying explain to a 2-year-old child that he has to take all this medicine is almost impossible.

He was placed in isolation. He could not have any child visitors nor could he leave his room. We were told his ANC was zero. Another new term. So what did this mean? To us it meant we had to wear masks, gowns, and had to make sure his environment was as clean as possible, but it also meant is that we all had educate ourselves and understand what was really happening.

The term ANC is short for Absolute neutrophil count. This is a measurement of the number of neutrophil granulocytes. Neutrophils are a type of white blood cell that fights against infection. This became a new way the medical staff and family judged how AJ’s immune levels were doing. Chemo therapy causes the ANC to drop over-night sometimes. A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells per microliter is considered as a high risk of infection. Neutropenia, which is the condition of a low ANC, is the most common measurement used in the setting of chemotherapy for cancer. So, now the family and doctors talk in terms of AJ’s ANC as to whether or not AJ can join if family functions.

Everything has happened so fast and continues to happen fast. Our family continues to band together and help. We have put AJ on several prayer chains. We also pray for him ourselves. It is so easy to question God as to why any of this is happening or why such a young life is having to deal with so much pain. None of us can say those thoughts have not cross are minds, but we continue to be trusting and faithful. It has been almost 4 months and AJ is still with us and fighting.

Chiari Malformation Awareness

I am sharing the below information with others to help raise awareness of Chiari Malformation. Although it is a rare condition more people are being diagnosed as a result of better technology. I was diagnosed several years ago, but as of late the condition has progressed and I am in the process of seeking a second opinion before proceeding with surgery.  Learning to live with this condition along with a spinal cord injury has made daily life a challenge.

What are Chiari Malformations

Chiari malformation is a condition in which the cerebellum and part of the brain stem push through the lower part of the skull. Normally the cerebellum, part of the brain that controls balance, and parts of the brain stem sit in a designated space at the base of the skull above the foramen magnum.

Chiari malformations may occur when the space where the cerebellum and part of the brain stem is smaller than normal, thus causing them to protrude downward into the upper spinal canal. As a result the flow of cerebrospinal fluid (CSF) may become blocked. Cerebrospinal fluid is the clear liquid that surrounds and cushions the brain and spinal cord. When the pathways are blocked is can cause a buildup of fluid on the brain called hydrocephalus or in the spinal cord called syringomyelia.

These malformations are uncommon, yet with improved modern imaging techniques and comprehensive exams physicians are beginning to make more accurate diagnoses.
Chiari Malformation type 1 is the most common type of the four possible types of the condition. Type 1 is also the only type that can be acquired. All other types are congenital.

Patients with type 1 normally do not have symptoms until late childhood or adulthood. This is because the malformation does not develop until the skull and brain have developed. On the other hand, patients with types 2-4 are often diagnosed in utero (during pregnancy), during birth, or during the first stages of infancy.

Symptoms

Patients that have Chiari malformation type I may complain of neck pain, headaches, balance problems, muscle weakness, vision problems, numbness or abnormal feelings in the legs and/or arms, ringing of the ears (tinnitus),hearing loss, dizziness, nausea, difficulty swallowing, facial pain, insomnia, and depression. Fine motor skills and hand coordination may also be affected.
Symptoms may vary from person to person and some may have no symptoms at all. The difference in symptoms depends on the buildup of CSF and the change in pressure on the tissues and nerves. For example, adolescent and adults may have no symptoms initially then later in life may develop signs of the disorder. Infants may show symptoms of any type of malformations. Their symptoms maybe difficulty swallowing, irritability during feedings, gagging or vomiting, excessive drooling, arm weakness, breathing problems, developmental delay and inability to gain weight.

If Chiari malformation type 1 if untreated may also result in the development of fluid filled cavities in the brain (hydrocephalus) or spinal cord (syrinx) which may eventually lead to syringomyelia. This can lead to irreversible damage to the brain or spinal cord.

How common are Chiari malformations?

In the past it has been estimated the condition happens one in every 1,000 to 2,00 births. However, the development of better technology and the increase use of diagnostic imaging has shown that the malformations may be more common. The estimates of actual cases is difficult as people born with the condition do not display symptoms at all or may not display them until they are in adolescence or adulthood.

Diagnosis

The most common method of diagnosis is the use of an MRI (Magnetic Resonance Imaging) in conjunction with the patient history, and a neurological examination. Sometimes a special MRI scan called CINE studies are needed to make the diagnosis. Additional imaging techniques may be used. Early diagnosis of Chiari malformation type 1 can lead to treatment before the formation of syrinx.

Treatment

The treatment of Chiari type 1 varies on several factors such as the severity of symptoms, whether or not syrinx (CSF fluid filled areas on the spinal cord) exists. For example, if a patient has no symptoms or neurological findings, the doctor ill often just observe the patient and schedule periodic visits to manage the condition. If the patient displays mild symptoms that are manageable, the physician may prescribe medications to help reduce the pain.

If the patient has symptoms that progress in severity, such as a decline in neurological function and/or they develop an enlarging syrinx, surgery may become necessary.

If surgery is recommended, it typically begins by making an incision is the middle of the back of the skull , and extends to about midway down the back of the neck. All the muscles are separated from the base of the skull to the fist cervical vertebra.

Next, a surgical removal of a portion of the cranium called a craniectomy is performed. This is done to enlarge the opening at the base of the skull and create additional space next to the brain to allow better flow of CSF. The neurosurgeon uses a specialized surgical instrument to carefully shave a small piece of bone about the size of a silver dollar. Next, the first cervical vertebra is removed. This called a laminectomy. At times, removal of additional cervical vertebra may be necessary.

Conclusion

Most patients with Chiari malformation type 1 often have no symptoms. The patient only finds out they have the condition after it is found during an evaluation for other non-related conditions.

Once a Chiari malformation is diagnosed, it is important to get an evaluation by a neurologist who then can refer you to a neurosurgeon if further treatment is needed. Early diagnosis and treatment of this condition is critical as surgical intervention for symptomatic Chiari malformation type 1 is most often successful when done early on. Many patients experience significant reduction of their symptoms after surgery and are able to return to daily life without activity restrictions.