Wednesday, September 17, 2014

Because we have to

Last week, I was finally able to do some light housework ( a couple loads of laundry and steam-cleaned one room.) I also was taking care of our black & tan Cavalier, Zoe, who got some sort of allergic reaction. As my stamina is low, when I push my body at all, it retaliates and this time it unfortunately kept me from visiting with my sister-in-law when she was in town for a square dance event on Saturday.  She encouraged me through text to get outside and enjoy the beautiful day. And we did. 
I couldn't resist a photo session. I was so engrossed in doing something I love, photographing the dogs, that I wasn't paying attention to how weak I was and fell over. No big deal-- a little fall. It happens.

That night, exhausted from the twenty minutes outside, I fell asleep on the couch at eight o'clock which is abnormal for me as I usually am up in the wee hours of the morning watching George sleep.  I woke up close to midnight and woke George up as well.

We were talking and suddenly George interrupted to share some unique symptoms he woke up having that he had never had before. A little more than 24 hours earlier on Friday, he had slipped in a wet parking lot at the vet and landed on his head and back. At the time he had a headache and backache but they had resolved the same day.

I read about concussion on Mayo Clinic's site and after talking with George about it, we realized he needed to go to the ER just to make sure that nothing was wrong. We didn't think he had anything more than a concussion but everything online said "Go in." Better safe than sorry.

George was not safe to drive to NCH's ER given his symptoms. At two something in the morning, there really wasn't anyone to call. I had not driven since a few days in February 2014, and before that it had been since February of 2013 that I had last driven. But, I wasn't feeling impaired by medication or illness, so it was up to me.

I could tell George was anxious about his symptoms and I was felt badly that I was only dropping him off and then I was returning home to reserve spoons (energy). As we were driving to the hospital which was twenty minutes away, I said to George, "This is a good thing that you got me driving again!" It felt great. I missed it. There was no one on the roads and it came back to me relatively easy. 

I made it home without difficulty and the freedom of driving was wonderful. George was texting me updates from the hospital. They put him in a collar because his neck pain was so severe. I turned on the tv and cuddled with the dogs. It was then, when I relaxed, that I noticed the shaking in my limbs and my abdomen. It was not anxiety.  So I made sure not to do much activity-wise and waited to be summoned back to retrieve George from the hospital.

George's CT-scan was normal except for some bruising on the brain and he was discharged with a concussion that we should watch, but he would be fine. By this time, I knew in my gut that my body was done.  I felt I could make it to the hospital, but I knew I needed George to drive us home and he said he could. By the time I got to the ER pick-up, my calves were cramping and my arms were shaking. I was concerned if I'd be able to move to the passenger seat unassisted.

As George walked up to the car, I rolled down the passenger window to tell him I would need help to the passenger seat, but the closer he got, I realized George was "out of it." He was exhibiting two of the symptoms he had been having earlier including that his communication was affected. I knew immediately he was unable to drive. So, I sucked up my pain and put it in the back of my head like myself and many others with chronic illness have to do on a daily basis. I knew I was pushing my body past its limitations but sometimes we gotta do what we gotta do.

Let me interject that I was completely shocked that my body would not physically hold up to driving two trips to the hospital. I've not emotionally processed that statement. I don't think I can yet. There is no reason I should not have been able to do it... Agh. Well. Actually, I do not know why I am so flabbergasted because I have been running up against extremely restrictive limitations for a while that I do not want to acknowledge.  I do not want to relay the truth and I can guarantee you, those who love me dearly really do not want to hear it even though they experience my restrictive limitations when they are with me. 

This is not supposed to be my life. 

By the time we got home from the hospital, I couldn't walk and I could barely lift my arms. George usually can help when I am weak, but his symptoms plus his neck pain made it so that he couldn't physically assist me. We have about 12 steps from the garage to the floor our bedroom is on. I was unable to do the stairs. In the past George could carry me, but he couldn't and so he pushed me up in an awkward fashion. By this point, my legs really had stopped working and I could barely move my arms. All my limbs were spasming and cramping. From my calves to my quads to my abs and arms and places I didn't know I was using while I was driving, everything was cramping at once.

I am going to say something that I really don't want to say out loud but it is part of this. Almost anywhere George touched my body was in pain and I screamed -more like freaked out whenever he touched me. I was cursing like a trucker, sailor and fisherman combined and as he was the one who was moving me in painful ways, I was saying really angry things to George. The pain was so out-of-control severe and I was exhausted and scared. George felt the full force of my anger and I am so sorry for it as he was just trying to help and I know he was doing the best he could do as he was exhausted and dealing with his concussion symptoms. From the time we got home, it took three hours to physically get me into our bed. I wish I had insisted that I sleep on the floor like I suggested (or more likely screamed), but hindsight is clearer. 

After the the dust settles on the initial realization that I am going through a severe illness flare or severe pain and it is going to be a while (days/weeks/months) before I find relief, it is in times like these, that I cope by being devoid of emotion. When pain gets to a certain level, my brain shuts my emotions down. No tears. Anger is probably the only thing that slips out if my pain/illness is provoked by someone else. Otherwise, my thoughts are: just get through it because I have to.

So, I've been getting through it. 
Sunday: If I attempted to move, my whole body went into severe spasms and I was cramping almost constantly. It was an excruciating day. I could not put any weight on my legs and I had no strength to maneuver myself with my arms. I couldn't push the buttons on the tv remote and George had to feed me until later in the day. Sunday was difficult for George as I was so dependent on him and the only emotion I could feel was guilt.  

Monday: George was back at work and I took a muscle relaxer and slept through the whole day with a heating pad on my legs. My left leg and arm were the worst. The dogs must've known I was doing poorly because not one of the three got up or asked to leave the room to go outside. Aside from a few snacks George left on the bed that morning, I hadn't eaten the whole day and hadn't gone to the bathroom. That night I still couldn't stand on my left leg but was able to get myself put some weight on my right leg even with cramping and pain. Using my fly rollator, this was the first time I was able to get out of bed independently. 

Tuesday: I could handle putting weight on my left leg with pain and cramping. I successfully navigated to the kitchen to let the dogs out and grab lunch! My legs cramped up but at least I was able to stretch them. I got out of bed a couple times to get myself moving, and was tempted to do more, but knew I should stop as the cramping in my legs had gotten worse. Tuesday night, I asked George to go for a walk with me around the house and he held my hand as we pushed the rollator once around the house. It was very romantic. 

Wednesday: I couldn't fall asleep until 4 am because the cramping in my legs was so bad.  Today, my legs and arms feel like lead. I'm glad I wrote almost all of this post yesterday. I am weak and my left side is still cramping and I"m pretty sure at some point I pulled my left groin muscle. I still need the rollator to walk. My emotions came back today.

In reaction to a post I wrote last month where I said I would be sharing more in depth about my illnesses interspersed between other posts, I was told that people do not want to hear in depth about the hardships that I face. As I said in that post: "My hope is that these posts will remind others who have these conditions that they are not alone. I also hope to bring some clarity to those of you who feel a bit hazy about my health issues." I use chronically ill jargon every day and don't realize that others just don't know what it means. Some assume that because I am diagnosed with anxiety that means I worry--which I don't. So if this blog is where I talk about my illnesses and this is where people learn how they affect me, and where others find comfort because they can identify with me, why wouldn't I decide to talk more about them? But after this person said that people wouldn't want to hear about it, I was hurt and couldn't bring myself to write those posts. 

But, today I am going to stick with what I feel led to write about and actually post this.   

George and I really haven't shared much of how or why these last two years, especially 2013 have been so difficult for us physically, mental health-wise and in our relationship which could not be more different than what it was in September 2012. But, I understand why this person told me no one wants to hear about it. It is difficult to watch people we care about suffer daily and connecting with what we go through each day can be too much to think about. I really do understand--I have to live in some sort of denial so I don't get overwhelmed with the truth of what is happening in my life right now. The sum of it all would crack me open. However, I also have to accept what God has given me and live -not just exist or survive- but actively LIVE with what I have. If my illnesses did not dictate much of my life, it would be different, but I have to go with the flow of what my body declares. And that means I have to choose to enjoy every single minute even though they are pain-filled and full of limitations. My life is beautiful, illness and all. 

What this person said keeps ringing in my ears and all I can hear is: "I don't want to hear about you." I know that is not what they said, but if you don't want to hear about my illnesses--you kind of don't want to hear about me. If my life had turned out differently...if I were a healthy mom...if I were a successful speech language pathologist... if I could be helping my father-in-law care for my mother-in-law who has progressing Parkinson's disease, with little grandchildren running around lifting their spirits, if George and I were still volunteering at the food pantry where we met and were leaders together...if I wasn't in a marriage that is struggling because of a suicide attempt...if I were...dare I say it...someone's version of normal, maybe they would be okay with knowing about my life?  

There are two reasons I talk about my illnesses and neither reason is because I am looking for pity. I know there are others out there like me and I'd like to give them hope that they are not alone. Second, I talk about my illnesses because I want to be validated as a person. These illnesses are not who I am but they are a part of me and as I said do dictate a lot of what I can and cannot do. I didn't choose this life. But, I choose how I frame it. We all want to be known and validated and perhaps even given some encouragement when we are stuggling. That is why we Facebook or tweet or post photos or email or text or call. If you share about yourself with anyone, you are looking for validation. It is not a bad thing. We all need it. 

I don't expect anyone to walk my journey with me except for God and George who promised to as I promised to walk through his with him. But I do feel thankful when someone does enter my reality and stays a bit with me. I try my hardest not to compare my life to what I thought it was going to be and I sure don't compare it to yours because I know that you go through stuff too and it is just as valid as what I go through. 

For George and me, chronic illness rips at our bodies, at our hearts, at our relationships, and at our most delicate marriage. But we keep going because we have to. This is our life and we want to live it--not passively, but with intention.

Happy Thought for Today:

-I was searching for something in my inbox and found an email from my dad from December 2012 that contained a voice recording from his dad. His dad, who passed away suddenly at the age of 74 in 1997 had recorded something on a memo recorder. My dad had transferred it to a digital file just before he accidentally dropped it and lost the original recording.  I'd love to know what prompted my grandpa to record those 12 seconds. The memo recorder was found after he passed away. Those 12 seconds remind me of his playful personality and it makes me smile: "Uh, Houston, we have a problem. We just lost our hot dog stand and the popcorn machine just went out. Now what do we do?" 

Friday, September 5, 2014

30 Things About My Invisible Illnesses -Migraine & NDPH- You May Not Know

September 8-14, 2014 is National Invisible Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved.  2014's theme is JUST ONE. "You may be just one, but you are one of over 100 million people who live with a chronic illness, and most of the illnesses are invisible."

The "30 Things You May Not Know About My Invisible Illness" meme has been around for a while. I filled it out here on my blog for II Awareness Week 2009. Five years later I am filling it out again & I haven't yet read the 2009 meme. I'll be focusing solely on Migraine disease & New Daily Persistent Headache (NDPH) as these are the ones I discussed five years ago. Click HERE to learn about Migraine. Click HERE to learn about NDPH. 

30 Things About My Invisible Illness(es) You May Not Know

1. The illnesses I live with are: Migraine; New Daily Persistent Headache; Meniere's Disease; Fibromyalgia; IBS; Anxiety; Depression; PTSD

2. I was diagnosed with them in the years: Migraine disease: February 14, 2006; NDPH: February 17, 2006.

3. But I had symptoms since:
 I’m pretty sure my first Migraine was in October 2005, but I was sick often growing up with chronic sinus headaches which the literature says are often actually Migraines that have been mis-diagnosed. I have had headaches as long as I can remember but they were more severe in high school. 

When I started working as a speech language pathologist for special needs 3-5 year olds in August 2003, I became sick more frequently. I had 8 sinus infections the first year I worked in that building. During the summer of 2005, I would have headaches when I was at work, but they would go away when I was at home. On October 26, 2005, the headache became severe and never left.  I have had that same headache every minute of every day since then. That headache is different from my Migraines and it is called New Daily Persistent Headache. According to this article by Teri Robert, "Many doctors consider NDPH to be the most treatment refractory (not responsive to treatment) of headache disorders."

Unbeknownst to me, the building I started my career in, in 2003, was laced with mold, to which I am severely allergic. On April 12, 2001, "The Daily Herald" reported on the building I worked in saying, "There are a number of structural problems and life-safety issues with the 42-year old building." According to an August 3, 2000 "Chicago Tribune" article, the district's Facility Advisory Committee for Education recommended the building be torn down. On December 12, 2005, as reported, the superintendent of the school district said, "he will recommend that the old deLacey Family Education Center, still used by preschoolers be torn down." Remember-these were special needs preschoolers. At the same time of this statement, I had been sat down by my supervisors saying that the building was perfectly fine. If you read the article link (please do), you will read that many residents in the area had health concerns about the building and justifiably so. The weekend before my life changed and my headache became disabling, I had entered a room that was used for storage and rarely entered. It had a very pungent smell of mold. In January 2006, staff and students moved to a brand new building. Suddenly staff whom had had several miscarriages got pregnant. The older building I worked in was finally torn down in 2010. But, it was all too late for my body. Genetics + environment = Disabling Migraines and NDPH.

The last day I worked, February 8, 2006, I had been laying in on the floor of the new building in the office of 14 (yes 14 of us) speech language pathologists. I had spoken to my neurologist (who lost his medical license a couple years ago) on the phone but he had dismissed me and told me there was nothing to be done. I barely made it through a parent meeting and promptly drove home to the contest of my co-workers. George, who was my fiancĂ© at the time, immediately took me to the ER.


4. The biggest adjustment I’ve had to make is:
 to the silence. Silence of working. Silence of interacting with friends and family in the way I used to. Silence of volunteering/serving others in the way I used to. Silence of doing the things I loved.

5. Most people assume: I am feeling well when I am with them or talking on the phone with them or posting happy things on Facebook when the reality is I have a mask up and actually in pain as my headache is constantly present. The severity may vary, but I'm always hurting. 


6. The hardest part about mornings are: waking up. My NDPH often is worst when I first wake up and takes a while to calm in severity if it calms at all.


7. My favorite medical TV show is:
  I don't have a favorite medical TV show, so I’m going to instead say that my favorite medical documentary is “65_RedRoses” which follows an incredibly resilient young woman with cystic fibrosis. I was inspired.

8. A gadget I couldn’t live without is: my iPhone. I could live without it, but I really appreciate it.


9. The hardest part about nights are:
 Being awake and in pain. Even though I am home alone all day, I feel the most alone when I am suffering and watching George sleep.

10. Each day I take: 16 pills and a patch. I also have 12 as needed pills and IM injection on any given day. (No comments, please)


11.Regarding alternative treatments I:
 have tried many alternative treatments for my Migraines and Headaches including: Biofeedback, Diaphragmatic breathing, Trigger Point Acupuncture, Cold Laser Therapy, SPG block using Spenocath device, MRT Food Sensitivity Testing & LEAP ImmunoCalm Dietary Management Program with a Nutritionist, Physical Therapy, Massage, Psychotherapy, Gentle exercise (Walking, Gentle Tai Chi, Easy Pilates), SootheAway Devce, Ice 

12. If I had to choose between an invisible illness or visible I would choose:
 Neither. Michael J. Fox, who has Parkinson's Disease, once said that if we all gathered in a circle and put our illnesses in the center in order to switch with each other that after we learned the true nature of the other illnesses, instead of switching with someone else, we would probably take our own illnesses back out of the pile.  

13. Regarding working and career:
 I have not worked since February 2006 and miss it terribly. I had been able to keep up with my continuing education. But I am currently in the process of going inactive disability with my creditation. I kept active for a while because I thought I might be able to work again. But, now I can’t even keep up with my continuing education (30 hours every 3 years) so it is time to go inactive. 

14. People would be surprised to know:
 I have spent the better part of the last two years either on the bed or on the couch. I saw barely anyone except George and doctors office staff in that time save when I saw my couple's small group a few times. When I visit with out-of-town family, I usually only see them for a few hours of the visit and am in bed the rest of the time due to one or more of my illnesses. When you see a photo of me on vacation and I "look good", I probably was sharing a small % of the trip. The truth of what the vacations are is that I spend 90% of the time unable to participate.

15. The hardest thing to accept about my new reality has been:
 Limitations. When I was healthy, I could push through anything without consequences. I felt I was like Monica on "Friends" in that she was "freakishly strong."  Not being able to push through my limitations also affects my ability to invest in and develop relationships.

16. Something I never thought I could do with my illness that I did was: handglide.


17. The commercials about my illness:
 misrepresent Migraine disease.

18. Something I really miss doing since I was diagnosed is:
 experiencing life with George without illness.

19. It was really hard to have to give up:
 becoming a parent. We tried through adoption & pregnancy and both times my health got in the way. It became clear that it is not something that I can do.

20. A new hobby I have taken up since my diagnosis is:
 cooking. I love it.

21. If I could have one day of feeling normal again I would:
 Find someone ill who is in need of physical help and serve them. I would invest lots of time in my friendships. I would do something active at church. I would drive six hours to spend time with my parents. I would drive 8 hours to help my father in law and enjoy the company of my mother in law. I would have my sisters in law and brother at my house and do all the fun things I have wanted to do with them. I would go out ballroom dancing with George. I would travel to meet all my chronically ill friends in person and hug them all. I would go to Cincinnati and just "be" with my soul sister.

22. My illness has taught me:
 acceptance; how to let go of expectations of others; a better understanding of others and their limitations; boundaries; how to let go of people whose friendship I was chasing; joy is possible at any time.

23. Want to know a secret? One thing people say that gets under my skin is:
 “I know that you have probably heard lots of suggestions and advice from people and I know you are probably tired of hearing them, but here is my suggestion for you or diagnosis of you." 

24. But I love it when people:
 Say, “How can I be a friend to you? How can I support you?" I also love it when people share their lives with me and trust me and allow me in. I love it when people treat me like I am Kelly, a person, not Kelly, an ill person.

25. My favorite motto, scripture, quote that gets me through tough times is:
 I couldn't have a favorite. But something I read recently and copied into my journal is: "I pray God may open your eyes and let you see what hidden treasures He bestows on us in the trials from which the world thinks only flee." St. John of the Cross.

26. When someone is diagnosed I’d like to tell them:
 Doctors are not gods. They make mistakes. Question them. Don’t blindly trust. Educate yourself on your condition and the treatment your doctor is recommending. Make connections with others who share your diagnosis. Most importantly get a recommended Migraine/Headache specialist.

27. Something that has surprised me about living with an illness is:
 This answer has changed over time. In the beginning I would’ve said I was surprised at how many friends I’d lost. Now, I’m surprised at how much effort I have to put in so that my life is not all about my illnesses.

28. The nicest thing someone did for me when I wasn’t feeling well was:
 listen; empathize; stay; give me grace; make me yummy Kelly-friendly food; not try to fix my "problem(s)," hold my hand and tell me "It is going to be okay."

29. I’m involved with Invisible Illness Week because:
 it is important to me that people understand that myself and many others like me are usually wearing a mask and you usually cannot see our pain. We may "look better" but that does not mean we are better.  

30. The fact that you read this list makes me feel: happy and grateful.

To find out more about Invisible Illness Awareness Week, please click HERE.

Tuesday, August 19, 2014

And Into the Light

The United Nations observes World Suicide Prevention Day on September 10th every year. And September is National Suicide Prevention Awareness Month in the U.S. which is ironic as it is the month George attempted.
30 days before attempt
This year, George and I are going to walk (and roll as my stamina is low) as a part of the Chicago Out of the Darkness Walk in Grant Park on September 20th. The American Foundation for Suicide Prevention (AFSP) who puts on these walks describes the purpose for the walks:
"Suicide claims more than 38,000 lives each year in the United States alone, with someone dying by suicide every 13.7 minutes. A suicide attempt is made every minute of every day, resulting in nearly one million attempts made annually.  When you walk in the American Foundation for Suicide Prevention's Out of the Darkness Walks, you join efforts with thousands of people nationwide to raise money for AFSP's vital research and education programs to prevent suicide and save lives. The walks raise awareness about depression and suicide, and provide comfort and assistance to those who have lost someone to suicide." 
25 days before attempt
We invite you to walk with us as a part of our team, to be a "virtual walker," to donate to support the American Foundation for Suicide Prevention, (AFSP) and or support us with your encouragement! Our team name is: "Wahle Warriors." Click HERE to connect to our page.  You can click the "Join Our Team" to walk in person with us or walk virtually. You can click on "Roster" where you can donate in support of our walk and roll for the AFSP. Please feel free to share our effort to support and create awareness for suicide prevention on social media/email!
23 days before attempt

George and I are walking and rolling in this walk because we feel very strongly about suicide prevention. As seen in the last week with the loss of Robbin Williams to depression, frequently questions are asked when someone attempts or completes suicide. "What could have been done to prevent this?"

12 days before attempt
What George and I learned from his attempt is that every single person should consider putting together a safety plan even if you aren't suicidal. We all have rough bumps along the road and those of us who have illness or are caregivers have even more reason to invest some time in some quick suicide prevention. George never would have thought he would have attempted to take his life and he still feels stunned that it occurred.  He also did not have any overt warning signs of being suicidal which happens more often than one might think.
11 days before attempt
Since his attempt, both George and I both have safety plans we wrote up for ourselves. We placed them in accessible locations in our house so if we are feeling hopeless we can access them quickly and easily. We used the safety plan template on the National Suicide Prevention Lifeline's website. Click HERE to check it out. It is basically a sheet meant for yourself where you write down what your possible warning signs of crisis might be; list things you can do on your own to cope; list people or activities that are distracting and healing; list people you can ask for help and their phone numbers; list professionals you can contact and things that make your environment safe. If you are in crisis, feeling suicidal or just need someone to talk with, please call the National Suicide Prevention Lifeline 1-800-273-8255. We have this number in our home and cell phones. You should too.

10 days before attempt
As we are walking to promote suicide prevention, George and I have talked a lot about how prevention measures could have helped him. In his particular case, George has an excellent "mask" that prevented himself and others from being aware of his severe depression.  He pushed through life  and without realizing it, stuffed his emotions away. My parents were with us on vacation as soon as four days before his attempt and they were completely shocked as he did not appear to be depressed at all and seemed quite happy.

Hindsight is 20/20. Before his attempt, George had been seeing a therapist individually and also with me to help us navigate life with chronic illness. George also attended my psychiatrist appointments with me and his depression was hidden so well that when I informed my psychiatrist of George's attempt, he was completely blown away. Calm, go with the flow, even keel George almost died from undiagnosed depression to suicide.
8 days before attempt

George's attempt is exactly why suicide prevention needs to be something that everyone addresses at some point. Yes, I am talking to you!!! George knew about the National Suicide Prevention Lifeline (1-800-273-8255) as he had been with me when I called it because I was concerned about a friend. We had discussed suicide and Migraine in depth as I wrote a series on it. I even wrote a post, which he had read, called "What are You Doing For Prevention?"  It can apply whether you have Migraine disease or not.

3 days before attempt
George probably knew more than the average person about suicide prevention. However, thinking about it when it relates to other people does not necessarily mean that any one of us internalizes it, especially if/when we feel that suicide would never be an option for us. In his wildest dreams, George never thought he would attempt suicide.

Please, take five minutes and empower yourself with knowledge. Check out Suicide Risk Factors & Suicide Protective Factors by clicking HERE so that you could recognize them in yourself, a loved one or friend.

Talking to a trained professional can often help us navigate life's rough patches. Psychology Today has an easy search by city for therapists HERE. HelpPRO has an advanced therapist search HERE that assists in finding a therapist based on items such as location, what they specialize in (i.e. suicidal thoughts, abuse, eating disorder, relationship issues ect.) and their expertise in treating certain groups (ie. adopted, caregiver, biracial, chronically ill, depression).

day of attempt
(at my dr appointment that morning)
I am walking in the Out of Darkness Walk for the man in that photograph on the right: the one who is feeling overwhelmed and having difficulty seeing a way out of his circumstances. I am walking for those he represents who need prevention and coping strategies. There IS hope. There IS help. There ARE people who care. There ARE ways to walk out of the darkness.  By a miracle, that man survived. With professional help and God's guidance, George has become a man who has committed himself to facing the depression head on, to getting treatment from a therapist who understands him, to getting prophylactic treatment for the depression, for meditating daily, for keeping up with prevention strategies, for bravely facing a life that overwhelms him, and for seeing the beautiful along with the hidden grime. George is in a better place than he has been in his whole life not because of the attempt, but despite it. HIS efforts with God's strength have brought him to a place where he is working on walking out of darkness and is walking into the light. I am thankful to have the opportunity and honor of walking with him.
We are Walking Out of Darkness and Into The Light.
Corolla, NC May 2014
*Every part of this post was approved by George from the photos to the captions to the content. He was an active participant in putting it together.  I would only ever share his story with his permission and with his guidance.

**Nothing in this blog is intended to be taken as medical advice. Please consult your medical health professional.

Take 5 Minutes 4 Suicide Prevention:
Excellent Suicide Prevention Resource: American Foundation for Suicide Prevention: Preventing Suicide Page

Friday, August 15, 2014

Do You Struggle With Two Brain Syndrome?

Yes, I have two brains and I imagine so do most people with chronic illness. I call it Two Brain Syndrome. One brain knows the truth of the current severity of my chronic illnesses, understands my limitations and respects what I need to do to take care of myself. My other brain is left over from my other body, the one before chronic illness. See, this brain thinks she can still do the things she used to be able to do with ease over nine years ago.

Brain One says:
You are running back and forth to the toilet because little dudes inside your bowels have sounded the alarm to evacuate! Your abdomen feels like a heavyweight boxer's personal punching bag. And did I mention, he has spikes on his gloves? Your mid-section has bloated to an unnatural size. Sorry, you are not pregnant, it was just the alien from the movie, Space Balls, waiting to jump out of your abdomen and he left an acidic goo that is burning your lower digestive tract. How do you like that screw driver drilling into your right temple and the icepick driving itself into your eye? Oh and that clamp around your head sure looks tight. Your stomach contents are threatening to escape. George has gotten louder, brighter, smellier and more annoying. Man, your legs are shaking from so little sustenance and so much running to the toilet.  How much longer until you can take your next medication? Don't forget that the sooner you treat, the better!
Brain Two says:
Yo! You are so bored. Let's do something. You want to be productive. You want to get to this doctor's appointment. You want to have some fun. Let's drive down to visit your parents or call to reconnect with a long lost friend. Let's do this!  You are more than strong enough. You can handle anything. Let's push through! Your body will be just fine. That to-do list of nine items is completely reasonable for today. Let's go! 
Somehow I have to figure out which brain to listen to: the rational brain who knows that I am too sick to push through or the idealistic brain who thinks I can do whatever I want to. Or perhaps I should mediate a compromise between the two. But it is not that easy. Though I usually have a good gut feel about my capabilities, Brain Two often convinces me I can do so much more. The down side of thinking I can do more than I actually can is being disappointed when I hit the wall and feeling regretful the next several days as my body recovers. Sometimes, pushing through limitations is worth it, but often it creates more problems. How do those of us with Two Brain Syndrome decide how far we can push?

This past weekend, George and I pre-bought premium plus seats at iPic Theaters for the movie, The 100 Foot Journey. We had assumed my symptoms would have improved by the day the movie came around, but we assumed wrong. I was determined to get out of the house as IBS and Chronic Migraines have made life challenging these last several weeks. I was feeling so weak, but I knew all I had to do was get there and know where the closest bathroom was. George and I debated up until the minute he helped me into our SUV as to whether going was the smartest idea, but we decided to at least try. George wheeled me in. I climbed in the chair which electronically reclined to my desired position.

A pillow and a blanket was provided. Our server brought me water and brought George a delicious meal. iPic premium plus seating is made for a chronically ill gal who wants to go on a date with her man once in a blue moon. And even though I was curled in a ball with a cramping burning abdomen and an intensifying Migraine, I was glad to be on a date in a theater with George turning his head and smiling at me every so often. He later told me he enjoyed watching me enjoy the movie.

During the movie he did not know how much sicker I was feeling compared to when we first arrived and I am glad for that because even though I was really feeling rotten, George was happy.  I was happy too -- even when feeling so sick. Moments like those are a gift. And iPic premium plus seating was a perfect venue for what I was able to do--even though it was a touch expensive!

This past Tuesday, I was still feeling weak. My IBS was calmer but rumbling and my head was hurting. I had canceled my prior two physical therapy sessions and I felt like I shouldn't cancel another one. So, I ignored my gut and we went. I felt like trying to go was better than not going at all, but that leads to a familiar story.

Halfway there, my symptoms got worse, but if I took my "as needed" IBS medication which needs to be taken at the first sign of symptoms (the equivalent for triptans in Migraine treatment), I would become sleepy from the side effects and how would I be able to participate? By the time my physical therapist came to get me in the waiting area, I had already made the decision to take the IBS medication and was holding my abdomen. Brain One was saying, "This was a mistake." Brain Two was saying, "You are already here, why not try until the side effects start?" That familiar inner disagreement has led to poor outcomes in the past such as passing out, but sometimes pushing through has been successful. Conflict mediations between the two brains are something that occur daily.

As my physical therapist works with many patients with sensitized nervous systems like myself, she was very kind in telling me that she did not want me to try to push myself. Her reminder was that if I push my system when it is vulnerable, I can trigger a worse reaction and become sicker. Thus, my physical therapist sent me home with gentle guidance to not push myself again. She communicated that she understood that if I cancel any future appointment, even several in a row, it would be because I had determined it was not the best for me. No cancellation fees. No guilt trips.

George had left work early to drive me to the appointment which was an hour round trip. But, the moment we got back to the car, George said, "I am proud of you, Kelly." It was sweet that he felt proud that I made the best decision for my body even though he had been inconvenienced and my physical therapist had lost an appointment.

The mediation of my two conflicting brains will continue. It is a fine line that takes a lot of thought and discernment of when to push myself and when not to push myself. Sometimes I obsess too much about a missed appointment or I feel excessive guilt that George has gone out of his way unnecessarily. I often deny myself the reality that Brain One sees or realize that I need to extend myself compassion. (In an upcoming post on IBS, I will share a video George took of me so that I could look back later and realize how sick I was.)

Do you have what I refer to as Two Brain Syndrome? How do you decide when to push yourself and when to hold back?

[Disclaimer: "Two Brain Syndrome" is not an actual syndrome. It is something that I made up to describe my experiences. I am not a medical health professional and nothing I write should be taken as medical advice.]

Today's Happy Thought: Around six months ago, George bought me a huge red stuffed frog to make me smile. By the smell, I knew he had bought it at the supermarket and it was not a pleasant smell. But as time has gone on and the smell has been treated, myself and the dogs have found this frog to be comfy.  I have no qualms saying that I like stuffed animals. They make me smile, make great pillows and neck rests.  Hello, my name is Kelly, I am 34 years old and sleep in bed with my husband, three dogs and several stuffed animals. And I'm not ashamed! Be yourself and allow yourself to add crazy things to your "Surviving Chronic Illness/ Migriane/ Constant Headache/ IBS/ Fibromyalgia/ Anxiety/ Depression/PTSD Toolbox."  Otherwise you might miss out on the chance to cuddle with an uber-soft large red stuffed frog!

Wednesday, August 6, 2014

Ever Wonder About My Chronic Illnesses? In Depth Posts To Come

Quite a bit of time has passed since I have shared an in depth discussion of my chronic illnesses. Interspersed among my regular posts, I will be sharing special posts on each chronic illness that affects me: explaining what the illness is (i.e. what caused it); sharing my history with the illness; describing how the illness affects me currently; discussing how the illness does or does not relate to others I have; discuss what treatments I have tried; share a general description of my current treatment regimen.

My hope is that these posts will remind others who have these conditions that they are not alone. I also hope to bring some clarity to those of you who feel a bit hazy about my health issues.

I have come to the realization that many people feel they do not necessarily know much about my illnesses, but are reluctant to ask about them because they feel like they should know -- especially if they have known me for a while. Additionally, when I get the question, "Haven't they found out what is wrong with you yet?" or when I hear comments about my personal health experiences that simply are not true, I realize I am overdue in sharing information about my health with my friends and family.

Since I withdrew from contact with people about 20 months ago, most everyone was left in the dark about how I was doing health-wise. I rarely communicated with anyone, including my parents. It was a survival mechanism. Time has passed and I am not in survival mode as much as I used to be, but I find it is taking more courage to be vulnerable than it did before George's attempt.

With God's guidance, I look forward to sharing the health issues that have taken up residence in my body. (I hope someday they will all be evicted!!)

If you have questions when reading about my health conditions, please ask! You can submit them in the moderated comment section or you can email me privately. These posts are for you.

While we are discussing questions about my health, if you interact with George, I highly recommend you ask George about how he is doing as a caregiver before asking him about how I am doing. As my caregiver and husband, my health issues are challenging for him physically and emotionally and he really does need to be asked even if he does not say much in response. Caregivers often get overlooked, and often need more support because they are shouldering the burden of caregiving. If you do ask George about my health issues, be prepared for a general answer as he says he is often unsure of what to share.

Today's Happy Thought: Casper, our senior Cavalier, who we rescued eight months ago, returned to the veterinarian who saw him three times in the first two weeks after we adopted him. Casper had multiple health conditions from abuse & neglect of being a puppy mill breed dog. She was extremely impressed with how changed he was physically and socially. Casper has become a D-O-G. If you have ever known a dog that has had the D-O-G taken from/beaten out of them because of neglect or abuse, you know how thrilling it is to see them move away from their trauma and into the life of a D-O-G.

Saturday, July 26, 2014

My Dad's Gift of Himself

Our doorbell is unplugged and from my bed, I heard a pounding knock on the door. Sick and in clothing not appropriate for strangers, I zipped my oversized Star Trek hoodie on as fast as I could and saw a FedEx truck outside. I opened the door quickly apologizing for the wait because I was sick and he said, "I'm sorry. But it is from Germany. I couldn't leave it." I signed my name.

I closed the door and clutched the package to my chest. I knew what it was. I leaned my back against the door and wept. I felt incredibly loved and thought: this is my dad--he has an incredible capacity to love and to give out of that love. 

My dad's 60th birthday is today but we celebrated it at my house over the 4th of July holiday with my mom, brother, sister in law, husband and my dad's brother. I had asked them to send me words that described Dad to them. I was hoping to amass sixty words and I got many more. 
The words were used in a gift entitled "60 things we love about You." 

Sixty things we love about my dad are: giving…  listener… insightful… artist… wise… loving… delegator… golfer… explorer … kind… caring… president… humble... clever.. planter... gracious... adventurer… patient… businessman… teacher… understanding... strong... compassionate... sharing… fan… brave… peaceful… trustworthy… student… photographer… sensible… protective… architect… thoughtful… honest…considerate… archivist… intelligent…funny… counselor… driven… athlete… fair… believer… handyman… family… handsome… leader… organized... attentive... generous... creative... chop... talented... traveler... prayerful... direct... dedicated... Christian... aficionado...

One of my favorite childhood memories is that my dad took our family on vacations at least once a summer. He would get really excited, put a map on the kitchen table and show us all the locations we would go and walk through his printed itinerary. One year we jumped in our suburban, affectionately known as the "Black Beast" and drove 5000 miles from Kentucky to California and back. One of many places we returned to more than once as a family is Jackson Hole, Wyoming in Grand Teton National Park. Dad and Mom started visiting there before they were married and return often. My Dad was there as recent as June of this year. Dad's memories of being there with his family draw him back to the glory of the Teton Mountain Range and Jenny Lake. Dad, being a talented photographer, captures the endless beauty and the images encapsulate the emotions of being there.


Me & My Brother at Grand Teton National Park, 1990
Jackson is one of those places that if I had a family, we would've been there several times by now.  Admiring Jenny Lake from hiking to Inspiration point; a guided boat tour of the Snake River; a trip to the lodge to eat at the diner; giggling about the meaning of the name of the mountain range; waking up early to capture photographs of the Tetons reflecting on the water; stopping along the road to admire the wildlife such as buffalo and moose. My dream is to someday be well enough to share the Tetons with George. When Dad was in Jackson in June while my mom was on a mission trip to Honduras, Dad shared many photos with me via email. As a photographer, his gift for capturing images is spectacular -- an artistic talent he inherited from his dad. 

Dad's inscription of Christmas photo
For Christmas, I received a gorgeous photo he'd taken of the light coming through the clouds in front of the majestic Tetons. The photo had been processed in a high tech photo-lab in Germany on museum-quality acrylic glass. When Dad was here for his early birthday celebration, he told me he had another photograph coming to me from Germany. I was overwhelmed--it is his birthday and he sent me a gift.
The dogs surrounded me, wanting to smell the package in my arms. I sat on the couch and slowly opened the many layers of protection until it unveiled an image that I interpret as my dad sharing with me his love of Jackson; his love of his mom and his dad; his love of the memories he made with them and his siblings; his love of the memories he made with Mom, with my brother and with me; his love of me. The image is simply glorious and speaks to me in ways I cannot explain.

I know my dad loves me more than words can describe and I know that not everyone has that. I appreciate how my dad loves me, how he has held me and rocked me when a boy broke my heart, how he has given guidance & wisdom, how he ran to my side when George was in a coma and held me up when I was sinking, how he gives to everyone he knows so generously, how he reminds me to let painful things go like balloons into the sky so they don't burden me, how he has done things to love me that I do not even know about. 
I love you to bits and bits, Dad. Thank you for being you. 
Happy 60th Birthday!
Love, Kelly