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.