Hello dear readers.
I have been away from both blogs for a little bit lately. My pain has been horrible, uncontrollable, and making me wish it was all just over. Its hard not to have those thoughts when you live with the pain I and others do. I’m still not feeling well enough to write, so my husband and care taker wrote a post for me from a caretaker and spouse’s point of view. Please welcome Jason Thompson.
When my beautiful wife was first diagnosed with Chiari in 2013, it changed our lives forever in ways we never could have imagined. It has created new obstacles, unforeseen challenges and persistent frustrations. However, despite all of those hurdles, it has also given me a deeper appreciation for what matters most in life, and an even deeper appreciation for the incredible woman I married almost nine years ago.
The transition hasn’t been easy for either of us. It’s not just a few minor changes; it’s a whole new way of life. Being married to someone who suffers from a chronic condition like Chiari and EDS means taking on new responsibilities, but it also means finding new and meaningful ways to support your partner. For too long, I thought that just meant getting up early and doing the dishes or folding the laundry (and yes, taking on a larger share of the household responsibilities is certainly part of the equation). What I’ve come to realize is that supporting a partner emotionally is far more important than chore you might complete around the house.
Loving someone who lives with chronic pain is a constant struggle because the pain can twist their mood and outlook in awful ways. But that same sweet person still stands in front of you, crying out for understanding, acceptance and love. Pain takes away so much; loving someone who is in constant pain means finding new ways to give our loved ones a life worth living.
If someone you love has been diagnosed with Chiari, EDS or another condition that causes chronic and debilitating pain, here are several pieces of advice I’ve found to be invaluable.
Support, Don’t Demand
One of the areas where my wife and I have struggled most stemmed from my habit of dictating what she should and shouldn’t do based on her pain. It’s OK to have a conversation from time to time to voice your concerns if you suspect your loved one may be doing something that is counterproductive or even a little bit dangerous. However, this doesn’t mean you should treat them like a child. Allow them listen to their bodies and do what they are capable of doing. Be willing to discuss their capabilities and limitations, and offer suggestions of ways you can support them rather than making them feel like an invalid. Having an honest discussion about these sorts of things is paramount. But lecturing your loved one and treating them like a toddler will only breed resentment.
This one seems like it should be obvious, but I can’t tell you how many times I’ve caught myself trying to “fix” my wife’s problems as quickly as possible when she says she’s hurting. Sometimes, my first inclination isn’t to listen; my priority is always to do whatever I can to make her feel better ASAP. In many ways, I think that’s a natural male instinct to adopt the role of a protector, and many parents doubtlessly feel the same instinct with their children. But oftentimes, your partner or loved one doesn’t need protection or a solution. They just need someone to listen and understand what they are going through, and to be able to connect with another human being. Pain is isolating, so when someone in pain reaches out to you, the best thing you can do is reach back. Not with a bottle of pills or a list of activities they should or shouldn’t do, but with an open hand and a sympathetic ear.
As I alluded to earlier, pain can often bring out the worst in people. But it is important to realize that the anger and depression associated with chronic pain won’t last forever. Someone in the throes of pain might withdraw or lash out when they are feeling their worst. Understand that if you respond to that negativity with more negativity, you only have yourself to blame. Instead of responding to a terse or angry comment with frustration or angry, focus on the reasons why they might be reacting in a negative way. If you know they are in pain, suggest ways to help. If that fails, give them reassurance that you care about them, and be willing to give them some space if necessary.
Most of us don’t fully comprehend what it’s like to go to sleep at night wondering if we’ll wake up tomorrow in too much pain to even get out of bed. I’ve heard too many stories of people who have Chiari whose partners jumped ship because they couldn’t handle the situation. I often wonder how many good relationships have gone down the tubes due to an unwillingness or inability to adapt to a partner’s disability, and more importantly, how many goodhearted people have been cast aside due to simple misunderstanding or just plain selfishness. In the end, leaving behind a good wife, husband or loved one due solely to their medical issues will never enrich your quality of life.
Patients who have chronic conditions don’t have a choice. They have to live with pain and physical limitations every day. But everyone around them has the ability to make a choice. We can decide whether to reach out a helping hand, offer a shoulder to cry on, or even just provide a sympathetic ear. Believe me when I say that every time we’re willing to make that kind of choice and give a little piece of ourselves, that love is appreciated more than we could ever possibly fathom and returned tenfold. And perhaps just as important, it shows us the love we have within ourselves.
When we are in pain, we don’t always take into account how those around us are feeling, nor can they truly understand what we are going through. I hope this post will be able to help some of you talk to your loved ones, and help them understand what we are going through.
Stay positive my dears!
As my dear readers and followers know, I have been having a really tough time lately. I don’t feel the need to dredge up the details, things just haven’t been good.
Those of us with chronic pain sometimes have those “why me” moments. Not that I feel sorry for myself, but there are days when I wake up, and my pain and limitations just get to me. Today started out as one of those days.
That was until a kind and dear person contacted me to let me know she was thinking about me, and had written me a poem to brighten my day.
Most people don’t realize that all it takes sometimes is just a kind word or message to really make someones day. No matter what someone may be going through, reach out to them and let them know you care. It can make all the difference in the world.
I was thinking of you today when I took my morning walk, I stoped to admire a flower struggling from under a rock.
The rock was strong and made the flower tilt, but nothing seemed to stop it as it thought it would never wilt.
Ever up ward it stretched reaching it’s petals towards the sun, but no matter how much the rock tried the flower seemed it had won.
To remove the rock would kill the flower with all the hard work it had done, to overcome such obstacles such as this little flower had won.
So, I continued on my walk and that’s when you occurred to me, always meeting obstacles but always gaining control, you never let things stop you from going where you want to go.
So I thought I’d write this poem for you,and every word of it is true, and bring a smile to your face and tell you I am here for you! Have a wonderful day Christina!!!
Woke up to a horrible comment on my Facebook the other day, but the day turned out alright in the end. Sometimes you have to look past the stupidity of people. You can’t educate those that don’t want an education. I decided to delete the negative comment, but wanted to share with you readers what I said in response. I don’t advocate retaliating or getting nasty, but I felt like something needed to be said.
“You don’t know anything about me, and it is OBVIOUS you don’t know anything about my condition. Before you make a snide and hurtful comment on what is a labor of love, why don’t you educate your self. Chiari is a progressive condition. I also have Ehlers-Danlos syndrome. My surgery WAS NOT A FIX. Do you want to know what my surgery did for me? It kept me from dying and made me WORSE. Not that its any of your business, but I was there for my husband EVERY SINGLE DAY he was in the hospital. I am not supposed to drive, but I drove and hour round trip every day for two weeks to see him and help take care of him. Even when my pain was at its worse, I still was by his side with no thought for myself.
This condition will kill me at a young age, but I guess I should just “take the fix the drs gave me and be happy” as you so eloquently put. Please educate yourself before you start talking about something you have no clue about. That I needed to get over my condition, I should be happy with the fix the drs. gave me. Was I even there for my husband when he got sick? I need to get over my condition and move on.
I gave myself a few days to think about this post. I wasn’t sure if I should give this person another thought or a minute of my time, but then I realized something needed to be said. People with invisible diseases face prejudice EVERY SINGLE DAY. It needs to stop. We need to stop judging others period. You have no clue what someone is going through. How about the next time you open your mouth to say something ignorant, or decided to hide behind your keyboard and make comments, you stop and actually think about what your saying. Ask questions. I can say for myself I LOVE when people want to know about my condition, because it means they care, and want to learn.
Ok. Rant over! Now on to the positive. I was recently asked to write for Hope Soup. So far I have written three posts for them, A Child With Chiari, What You Don’t See, and Intimacy and Invisible Disease. My post “A Child With Chiari”, broke records for viewership on the blog! I am also helping Hope Soup set up and run a foundation, The Hope Soup Foundation, to help others with invisible diseases get the help they need to get treatment, connect with others, and hopefully find answers. So Life with Chiari has been a busy gal! I am not giving up on this blog either. I will still be writing different material for both. After all, my webmaster has to eat!
So dear readers, please visit me over at Hope Soup, and be on the look out for the foundation to get started!
Its good to be back to blogging! I have missed you readers! I want to share something with you that really got my blood boiling this week.
This weekend, I went back to Ohio to visit my Dad and other family on his farm. I was having the time of my life. As most of you know, I hardly ever get to leave my house, so this was huge for me. I got to go to a horse show, took all kinds of photographs, and had a wonderful time seeing people.
I am going blind in both eyes now, and I want to experience everything I can before Chiari steals my sight as well.
Since my Chiari community is such a huge part of my life, I wanted to share my good times with my Chiari group. The backlash I received for riding a horse just turned my stomach and broke my heart. While most of them were happy for me living life on my terms, quite a few more said some really horrible things to me. The vicious things said on my post got so bad the admin of the group had to delete it. Its such a shame that we all have this horrible condition, but we still feel the need to gang up on one another. We need to come together as a SUPPORT GROUP. If you don’t like a post, or you feel someone is endangering themselves, there are more positive ways to go about it. There is no reason to make someone feel badly because they decided to finally take their lives in their own hands.
I understand there are a lot of things we aren’t “supposed” to do. I get it. I really do, but I am not going to spend what precious little time I have left on this earth rotting away in my chair! I’m going blind, and my body is betraying me at every step. I can’t sit back while life passes me by just to get a few days more. If I had fallen off that horse and died, I would have died happy. For the first time in a very long time, Chiari and my pain didn’t hold me back. I was the master of my day, and it was one of the best of my life. I don’t want my friends and family to look back and say, “Sure, she had a few more years, but she never left the house.” I would rather them say, ” Christina lived her life to the fullest. We miss her and love her, but she didn’t let her condition hold her back from her adventurous spirit.”
So go dear readers! Live your life. Seize the day. You have Chiari, or EDS, or some other condition, but it by NO MEANS has you!!!
Photography Courtesy of Carousel Photography
I have been having a really rough time getting my Chiari and EDS symptoms under control, so I thought I would share with you some things that have helped other Chiarians when they are having problems. They may help, they may not, but it never hurts to try. Please do not try any activities that you have not first cleared with your doctor!
1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainer sneakers are recommended – New Balance, Nike, Reebok etc.- test before buying.
2. Avoid neck-stressing activities (football, soccer, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)
3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fiberfill are very good for this i.e. little or no “push” back. (see expanded list below for other comments about pillows). Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Elevate your bed at the head 4-6 inches by inserting old telephone books, bricks, boards or blocks under the front frame legs. Have a strong relative or friend assist you. If possible, do the same when staying at a hotel/motel or at the home of relatives.” Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.
4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.
5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities – STAY LEAN
6. Sit in soft recliners with high backs and foot rests.
7. Support reading material with elbows on your knees/thighs or chair arms. Read “straight” ahead. Use book holders or music stands. Look at computer monitors straight ahead.
8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopedic collars help reduce neck stress when riding in a car etc. Some do not.
9. Relax and avoid stress and noise. Don’t tighten the neck muscles. Stay “cool”.
10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.
11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.
12. Heavy jewelry, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don’t wear them.
13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.
14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.
15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.
16. TENS machines may help Chiari and syringomyelia patients. Especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home, but some insurances with cover the cost. As always, check with your doctor first.
17. Avoid cervical traction.
18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation. A Chiari Sister recently died from a lumbar puncture.
19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.
20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating Chiarians. One member’s herniation significantly increased after cervical adjustment. “That is because I herniated from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)”.
21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible. See the items on the expanded list below for some helpful hints.
22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.
23. Increase foot/ankle support by wearing Nike, Reebok or New Balance Air cross-trainers or similar highly cushioned/ supported shoes (i.e. cushion the cerebellum). Running or walking shoes typically do not have the proper support. The cross-trainers are sold in most sneaker stores. Since each brand is a little different, it is recommended that you test the different models before purchasing. Use gel pads as inserts in your shoes , put them in before you choose the shoes since they take up more room . Berkinstock makes a similar insert pad that’s good too. These help when fashion dictates something other than athletic shoes.
24. Avoid neck “jerking”/stressing activities such as football, basketball, tennis, weight/furniture lifting, wave pools, roller coasters, backpacking, extended reading or sleeping with the head bent down or up, etc.
From Andrea Traugott:
Using a computer is probably one of the worst Chiari symptom exacerbators there is. Sitting, staring and using the keyboard can mess up even the healthiest body let alone ours. Have the screen (or monitor) at eye level and if at all possible, get an ergonomic chair for the back. Remember to sit in the new chair correctly (butt to the back of the chair, not on the edge, feet flat (no leg crossing) and keep your back as straight as you can in the back of the chair.) You can also get an ergonomic keyboard to help the strain on your hands, wrists, arms and cervical area of the neck. The keyboard is slanted/sloped and you’ll need to get used to using it. My hubby bought me one for my birthday and I love it! Also remember to BLINK!! It lubricates the eyes and prevents dry eye.
From Jim Foutty:
When you think of Chiari malformations, picture in your mind an orange with a cord through its middle sitting on top of a soda bottle. If you get hold of the cord and pull downward, this is in a simple way, what is happening to our brain. It is trying to make its way down through a very small opening so what we must do is to stop and reason carefully what we do and the affect it will have. Lifting heavy objects, squatting down, bending a lot, working overhead and using our upper body are some of the things that will cause a downward pull or a swelling of muscles in the neck and therefore cause increase in symptoms. Be careful of anything that puts you in jeopardy of falling and creating trauma of any type.
Get plenty of rest and sleep- use a small soft pillow, fiber better than foam, and extra side pillows/rolled towels to prevent rolling to a neck-pinch position,- sleep with your head higher than your feet,- a head down position can cause significant pressure on the neck. Dr. Milhorat recommends sleeping on a bed that is elevated to some degree at the head board. Some Chiarians use a water-base pillow Mediflow Pillow. Other types use a sobakowa pillow, or a feather pillow. When staying at a motel/hotel/guest quarters, roll up two or three large towels and insert them between the mattress and the box springs near the head board. Sneakers will also work. Don’t forget to remove the “risers” before you leave.
Eight plus hours of sleep are recommended by most Chiarians. If possible get a nap during the day. It helps to refresh and get through the rest of it. Stop eating and drinking three to four hours before bedtime to reduce the need to get up during the night.
From Sue Marsigli:
Not finding a pillow that is comfortable enough post operatively is an issue many of us face. Before anyone has surgery the issue is much easier to face as you are only dealing with finding the position in which you can put your head and neck that will not increase any of the symptoms.
After surgery you are still dealing with this issue, but in addition, you are dealing with scar tissue, sore incision sites, bone pain or pain from the hardware. Also, if you have to wear some type of brace to sleep in.
Sleep is usually interrupted for many of us and yet this is probably the only time that we are able to unload our spine for any length of time and this is needed to aid in the healing process. I wish there were a magic answer of a pillow or bed that would work for everyone. What is important is to try various amounts of different things and constantly reevaluate what you are doing. Is my head and neck in a neutral position-how long does it stay there before I have to move, what position causes increase in pain, how long at a stretch am I really sleeping? The list of questions goes on and on.
Get your spouse or even a child to look at you when you are sleeping and the next day (don’t need to wake you up after you finally got to sleep) let you know what position you were in. You may need to brace yourself with some pillows or towel rolls. I do know that with scar tissue a hard surface is probably not going to be your best bet but then also you don’t want to go with something too soft. I think that when you get some type of material that has some play with it you have a better chance in succeeding to achieve the correct amount of support.
I also think that we tend to forget about using some terry cloth towels rolled to the correct height to wear around your neck to sleep with. The material is soft enough to not irritated the scar tissue and yet strong enough to give the neck alignment that you need.
Sleep patterns take 6 weeks to change so don’t expect to change things overnight. If you are able to comfortably sleep for two hours then I bet you are on the right track and that with time your pattern will increase. You will constantly need to change things as you heal and some things get stronger-muscles and scar tissue so be ready to make adaptations.
I bought a pillow from Brookstones and have found that is the only pillow that I can use to sleep with. It is called Tempur-pedic and it is a little bit pricey. Standard size $99 ($130 queen size), but it is amazing and I highly recommend it. I know that when I bought it I thought, “Here goes another one that will not work.” The salesman told me to keep the plastic on it and if it did not work to return it for a full refund. They couldn’t buy it back from me now. It works on the theory of the heat of your own body allows it to conform to your head and neck. I think that this is great, especially if you have had surgery. When you have had surgery there is scar tissue that has formed and when you use an orthopedic pillow that is supposed to put you in so called normal alignment, the scar tissue is stretched and therefore it is uncomfortable. This pillow molds to you and gives you support instead. Hope this helps. I know that my breathing and swallowing and hear difficulties are better with this.
Instructions for a Postoperative Pillow (from Patrick’s Mom)
Purchase an inexpensive feather pillow (king-size is best). Remove any protective zip-on liners that may have come with it. Equally “divide” pillow in half by pushing all the down out to the sides. Pin the center of the flat pillow ticking with straight pins from the edge to about half-way through to prevent the down from moving back into the center Either by hand, or by machine, baste-stitch in the center from the edge of the pillow up almost to the middle, across 3/4″ and back down the other side returning to the edge of the pillow. Return pillow to any liner and give it to your favorite Chiari patient!
This pillow keeps direct pressure away from the surgical incision when the patient is lying on his/her back, yet allows them to turn from side to side without needing to re position the pillow. A king-size pillow works best because it provides cushioning across the entire length of a hospital bed and allows extra room for turning from side-to-side. If you take this pillow with you to the hospital, be sure to put a vinyl liner around it to protect it from post-surgery nausea!
From Suzanne Chisum:
Dr. Milhorat told me something interesting. He called it Meniere’s Syndrome. It is when a person with Chiari has a build up of fluid pushing on the semi-circular canals in the inner ear and it produces Meniere’s like symptoms.
(Meniere’s disease is a disorder of the inner ear that causes spontaneous episodes of vertigo — a sensation of a spinning motion — along with fluctuating hearing loss, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in your ear. In many cases, Meniere’s disease affects only one ear. People in their 40s and 50s are more likely than people in other age groups to develop Meniere’s disease, but it can occur in anyone, even children. Although Meniere’s disease is considered a chronic condition, various treatment strategies can help relieve symptoms and minimize the disease’s long-term impact on your life.)
He told me that he operated on 70 people with these symptoms, having them go through a thorough exam by an ENT and then he has them go through it again after the operation and has seen great improvement
Wearing a soft cervical collar when in a car is found to be helpful by many Chiarians before and after surgery. I also use a cloth sleeve filled with the plant potting granules that hold water and sew it to fit my neck. Soak in water for a few hours and it holds the water turning into a firm gel. This then evaporates in the heat over several hours keeping you cool. It makes a huge difference when its 90 or 100 degrees outside. I like using old silk ties from the thrift shop for these. They come in great fabrics and colors for pennies.
From Donna Corman:
Last fall at a craft sale I bought this thing that could be put in the freezer or in the microwave. It works great. And is so simple to make. It’s just flannel material sewed in a square and filled with rice. Make them any size you want. The one I have is about 8″ x 8″ and is filled with three lbs of rice. They just look like those bean bags we use to play with as kids. Be careful the first time you put them in the microwave. Each oven is different. Please start out on the lowest setting first. These things work wonderful and just the light pressure feels good when I must use them on my head. I used the frozen vegetable bags the other night because I needed so many for my legs.
We found ACE manufactures an ice pack that is reusable and soft (conforms to the body). It’s order number is 207516. Hope this helps someone.
A healthy vegetarian diet really helps with the constipation. It is much higher in fiber and beans/lentils ferment and breakdown faster then meat. When I start having increased constipation which is often I decrease meat and increase beans with much success. There is the “gas” problem, but if fiber is added gradually and beans/lentils are used as the source of protein daily the body adjusts and the gas problem resolves. This also can often alleviate the need for bowel medications which can interfere with nutrient absorption. For anyone with a history of coronary problems a well balanced vegetarian diet can also be very beneficial. Adequate water intake is also very important, I stress water not soda or coffee. I am a registered dietitian who has treated many people with constipation and have post surgery symptoms from Chiari.I know how bad straining for any purpose is to our well being.
I also found two other things that help. I use a rocking chair in the mornings while at my desk. I don’t have the faintest clue why, but the motion of the chair helps some. Set a timer to go off about every half hour and do five minutes of stretching . If I sit too long, I get stiff and achy.
This list can be given to anyone, anytime, anywhere. It is a compilation of suggestions made by WACMA members over the past five years.
I hope some of you were able to find this helpful.
Stay Positive Dear Readers!!