Saturday, February 26, 2011

I Want to Know How To Get Through This.

I have been spending a lot of time thinking about Paul lately. Paul lived a hard life. He endured a lot of suffering, emptiness and pain that God did not take away. I can really identify with Paul. I feel like I am imprisoned by my illnesses and my house right now; Paul spent a lot of time in prison. I have been so tired of being in my body that I have yearned to be released from it and go on to heaven. Paul felt like that too. Paul who? Paul who wrote many of the letters in the New Testament in the Bible. Paul, the guy that was brutally killing Christians and then was blinded on the road to Damascus, saw Jesus and became a Christian. That Paul.

Paul wrote in 2 Corinthians 5:1a and2a, "We know that our body--this tent we live in on earth will be destroyed...but now we groan in this tent." I hear you Paul, I'm groaning! 

My question recently about my life is not "Why?" but "How?" How do I get through all that keeps being piled on my plate? How? As I've been journaling, praying and reading, my thoughts have turned to Paul. With everything he endured, how did Paul do it? So I have been turning to the second letter he wrote to the Corinthians to hear it directly from the man himself. 2 Corinthians 4:7-10 (New Century Version)
We have troubles all around us, but we are not defeated. We do not know what to do, but we do not give up the hope of living. We are persecuted but God does not leave us. We are hurt sometimes, but we are not destroyed. We carry the death of Jesus in our own bodies so the life of Jesus can also be seen in our bodies.
*We are not defeated.
*We do not give up the hope of living.
*God does not leave us.
*We are not destroyed.
*We allow the life of Jesus to be seen.

Defeat. There have been many days where chronic illness has made me feel defeated. So much has been taken away because of my Migraines and Meniere's. Many of the hopes and dreams I have had for my life have been defeated. I wonder if Paul is talking about the bigger battle here. No matter what my chronic illness takes from me, I am still me. I am here: a fighter, a survivor, a warrior with God's Spirit inside of me.

"We do not know what to do." If we were in a church where the listeners gave choral responses, I would expect to hear an "amen" from all my chronic illness sisters and brothers. How many times have I felt like I have no clue which way to turn? Too many to count. When another preventative fails, or when a treatment option does not work, I feel so frustrated with not knowing what to do. But, Paul says "we do not give up the hope of living." Hope is having faith in something we cannot see. Paul is calling me to faith in the future God has planned for me.

God does not leave us. This can be hard to remember when we feel like God is not doing anything to change our circumstances. When healing does not come, when relief does not come, I have asked "God where are you?" But he is here. Another key of how to get through: remembering God is always near.

"We are hurt sometimes but not destroyed." I have been hurt to the point of feeling as though I were destroyed. I have laid in bed in such agony that I thought nothing could be worse than what I was going through at that moment. Perhaps how I am to get through those moments is to remember that this will not last forever; it will not destroy me. Whatever I am going through may attack or even kill my body, but it will never destroy my spirit.

I feel so connected to vs 10 which says, "We carry the death of Jesus in our own bodies so the life of Jesus can also be seen in our bodies." I can only hope that in some way through my suffering, God will be glorified. It is something I pray for daily.  Paul is telling us to allow Jesus to work in us and through us. When I feel God working in me, I feel fulfilled and it helps me to get through my suffering.

Thanks Paul. I needed your wisdom today.

Thursday, February 24, 2011

Daily Goals Getting me Through

I wrote on Sunday in my post, Chronic Illness Blues and My Plan, about what I was going to do to help my emotional/spiritual health and my physical stamina as my Migraines and especially my Meniere's attacks have kept me pretty immobile and have been draining my stamina.

I am so glad I wrote out that plan because it has helped me to strive for those things. Every day since, I have read, written in my journal, prayed and reached out to the chronic illness community. I added a book by Joni Eareckson Tada More Precious Than Silver: 366 Daily Devotional Readings that I also read from. Reading from different books has daily brought me out of my funk. I've written in my journal even on days I did not think I had anything to say and I have been surprised at the emotion that has poured itself onto the page! I have a lot going on inside that I was not acknowledging. I started contributing to MyMigraineConnection Forum again after a nine month break. I also joined another chronic illness community Chronic Babe and have already had some great discussions with women with a variety of illnesses. One thing I want to do more of is devote more time to praying. I say sentence prayers here and there, but I have not been giving it the actual time and space that I used to.  As Dr. Paul Brand wrote in his book, The Gift of Pain,
Prayer helps me cope with pain by moving my mental focus away from a fixation on my body's complaints. As I pray, nourishing the life of the spirit, my tension level goes down and my consciousness of pain tends to recede.
As far as my physical stamina goes, I re-started  Gentle Tai Chi. I know this routine so well that I could do it in my sleep. Actually in the summer, I go outside and do it in my back yard as I find it especially relaxing with the warmth of the sun shining down on me. On Monday, I did part of the routine seated. On Tuesday, I did part of the routine standing. And yesterday and today,  I completed the full routine standing! I've also managed to fold some laundry. Small things that are huge victories! I cannot wait to get on the treadmill, but before that happens I have to work on getting up and down the stairs.

At first, when I wrote the blog about my chronic illness blues, I was only going to vent and not create a plan. But as I wrote, I realized I needed a plan and writing it out helped to keep me motivated. Having a plan has given me structure and goals to get through my day, and this has actually helped my emotional health even more.

Wednesday, February 23, 2011

Dependence on Our Caregivers: How do you cope?

I cannot remember the last shower I took where George was not in the room to make sure I was safe. The severe vertigo episodes from the Meniere's has made it so I often lose my balance and I get drop attacks. So, having George nearby during a shower is a safety issue. When we remodeled our bathroom in 2008, we had a permanent classy handicap bar installed, though George miscalculated the height and it is several inches too low. So, we have placed removable grab bars that I can use to steady myself, but they would not hold my weight if I were to grab them while falling. Additionally, a couple years ago, while spending a couple of weeks caring for me, my in law's bought me a shower chair so that when I am weak I can sit. But, now I must have George present to help not only because of my extreme weakness but also because a few weeks ago, George came home from work to find me on the floor after I had tried to take a shower by myself and had fallen from a Meniere's attack.

George is in the midst of his busy season. He is only home awake two hours a day, six days a week.  When he gets home, he is mainly caring for me. I have a lot of guilt related to this because I know he would just like to plop down on the couch and relax but he loves me and wants to take care of me. I have had family, friends and my counselor all tell me to drop the guilt and I am attempting to, but if you would step into my shoes you find it is not so easy. I see George's care-worn face on a daily basis. So, because of my sadness and frustration at my limitations and necessary dependence on him, I often go without some basics. This is embarrassing, but true: I usually go four to five days or more between showers. I'm not really doing anything to get dirty, but still, we all feel better when we're clean.  

So, today I was stubborn. I honestly can't remember the last day I showered. I know the reason is a combination of the days blurring together and the fact that it has been a while . I did not have any vertigo, so I felt safe I would not fall from the Meniere's and midday decided to attempt taking a shower by myself. As I got out of bed and gathered my clothes I felt quite shaky and weak. I got through the shower okay, but as I was getting out, my legs were starting to give out from under me. I sat down, threw my clothes on, made it to the bed, turned on the television and immediately fell asleep. My body was so worn out that I slept for quite a long time. On days like today, taking a shower is a work-out.

I would love to hear your stories of how you have had to be dependent on others, how it has made you feel, and how you have coped emotionally. I know that I am not alone, but it would be a great comfort to hear others' stories.

Tuesday, February 22, 2011

SootheAway Continuous Thermal Therapy Device: A Migraineur's Review

I was not really looking to add to my Migraine toolbox when I found SootheAway in an advertisement on a  I searched for and read Teri Robert's review. All things considered, the SootheAway device seemed worth trying, but since it was expensive I discussed it with George. In the end, we thought it would be a good investment especially if it helped me even just a little. I ordered the SootheAway device from their website (which comes with one free pad of your choice: mine was the front/side head pad). I also ordered the rear (occipital) pad and the car power charger. I placed my order online the evening of February 17th; I paid standard shipping, and FedEx got it to me during the day Saturday, February 19th! Incredible! I have only had the SootheAway for a few days but because so many people have been asking me my opinion, I have decided to share what I think thus far.

Instead of writing a review, it seemed more fitting, to do a video review. I had to upload it in two parts, so make sure you watch both parts! I have included all the information that I wish I would have known before I bought the device, so again make sure you watch both parts because I summarize my thoughts at the end of the second video. Please let me know if my review is helpful for you. Also, if you have any questions, please ask away!

Part One:

Part Two:

As is it is probably apparent after watching both videos, I had a pretty severe Migraine which I had treated with Frova, both of which were making it incredibly difficult for me to think clearly. I probably would win an award for the number of interjections (um/er/uh) that I said. I hope that it did not interfere too much with my ability to convey what I wanted to say.  I guess my Migraine made this a true Migraineur's review.

Sunday, February 20, 2011

Chronic Illness Blues & My Plan

It has been a couple weeks now that my Meniere's attacks have been keeping me bed bound.  Thankfully today was my first day in weeks without vertigo (*knock on wood*). However an hour ago, I got the intermittent hearing loss and tinnitus, which often means vertigo is just around the corner.

Here is a typical day in my life these last couple weeks : I wake up in the middle of the night/early morning with severe vertigo. Vertigo makes it impossible for me to sleep/walk/see/concentrate/focus/think. I take a full dose of the acute medication to knock out the vertigo. It also knocks me out and I am sedated for six plus hours. Around late-morning/midday, I fight through the medication, grabbing for the television remote on my nightstand in order to hopefully wake myself up with some tv. Sometimes the vertigo has calmed down enough that I am able to get dressed and lay on top of the bed but under the quilt that some Amish women made especially for me.. Sometimes the vertigo is so severe I am not coordinated enough yet and I'm stuck in my pajamas, under the covers for the majority of the day until I am steady enough to stand up and get dressed, not just throw myself to the bathroom and back. My body is so fatigued. On these bad days, I am trapped in my sky blue bedroom. The four walls are like a cell. I can almost feel the cold chains around my body weighing me down.

On a better day, after the morning debacle of waking up with severe vertigo, taking medication and then fighting myself awake, the vertigo comes in mild to moderate waves throughout the day. On those days, I load up my rolling walker with books/iPad/computer/medication/water/a stuffed panda bear/neck pillow and make my way to the leather couch in the living room. My two faithful followers, Knightley and Zoe nest in on either side of me.

You read that correctly, I have to use a walker right now. My stamina went downhill so fast that my legs frequently give out from under me. As you can imagine, this is quite humiliating. I do all I can to keep up my strength, but some days it simply is not possible to do any more than I am. The Meniere's makes it extremely difficult, not to mention the constant severe Migraines.

So as anyone who would be in my situation, I have the blues. Actually, I'm depressed and fighting anxiety. I had George move the dirty laundry into the other room because I was so sad that I am unable to do something as simple as laundry. Being so extremely limited can take a toll on one's emotions. So I have committed to fight back. I have created a plan to get me through this rough spot until the limitations are lessened. My plan is twofold: Do things to support my emotional/spiritual health and do things to support my physical stamina.

Plan for my Emotional & Spiritual Health:
-Read daily. I am committing to read from one or more of the following: Bible, One Year Book of Hope by Nancy Guthrie, Mosaic Moments: Devotionals for the Chronically Ill by Lisa Copen, and A Place of Healing by Joni Eareckson Tada (for which I'm anxiously waiting to arrive in the mail).
-For distraction, I have toyed with the idea of getting a fiction book, The Outlanders, on the Kindle app of my iPad, but that will come down the road when focusing on a computer screen isn't such a struggle.
-Journal daily. Even if it is simply copying a passage or verse that is meaningful to me, I commit to writing once a day. Hopefully though, I will spend more time actually writing about my emotions. As I am a verbal processor, I know writing will help me process through my emotions about my situation.
-Reach out to Chronic Illness Community daily. Whether this be by writing blogs, reading blogs, participating weekly Migraine Chat, and/or participating in forums, staying connected will help me stay grounded. 
-Pray daily. Keeping a close relationship with God is vital to getting through each day and that means talking to him must be a daily priority.
-I have many other ideas, but I think this will be a good start.

Plan for my Physical Stamina:
-George is in the midst of his busy season at work where he is gone from 6:30am-7:30/8pm and sometimes later six days a week.  So, taking care of myself is good for keeping up my stamina. It may seem simple, but walking to the kitchen to get my meals and letting out the dogs will help my stamina.
-I love doing Tai Chi, but unfortunately I am not yet strong enough to stand in one place for fifiteen minutes, but I am trying to do it in increments. I plan on starting it seated and then will work up to doing it standing. Eventually I hope to make it back to the treadmill. Of course, my vertigo has to cooperate, but this is my plan.
-I plan on stretching. I can do simple stretches, even from bed, that will keep me flexible.

So I'm going to keep taking things one day at a time. I'm gong to try to not get overwhelmed by the things I can't do (i.e. laundry). I'm going to focus on what I can to to help improve my situation.

Saturday, February 19, 2011

My Plans: Parenting; God's Repsonse: No

I have been trying to get through my "update" blog posts (What Happened to me in 2010?, Change Change Change and Another Chronic Illness? Really?) so that I could start getting to the nitty gritty of what I want to write about. Today I want to write about something that I think most young women of child-bearing age think about: having children.

Growing up, what I wanted to be was a mother.  I went to four years of undergraduate and two years of graduate school to become a speech language pathologist (SLP), but oddly enough even as I was working my butt off in school, I never saw myself as an SLP. I saw myself as a stay at home mom. Being an SLP was my back-up plan if you can imagine. I was an SLP serving three to five year-olds with varied disabilities for almost three years. Then Migraines entered my life and I was quickly unable to work at all.

Over these past years of disability, George and I had many discussions about having a family. He always said, "If it happens great. If not great." I must say George is the most easy-going, contented man I know. Of course my mind was set on having a family. As the years went on, we had many discussions over whether or not we should have a biological child or adopt a child. We have so many genetic issues in both of our families: Migraines, Crohn's disease, Parkinson's, Depression, Arthritis, Anxiety, Multiple Sclerosis, Cancer, ect. As genetically a biological child of mine would have a 50% chance of developing Migraine disease, it makes one wonder whether or not I'd want to bring a child into this world that may suffer just as much as I have. Ultimately though, we realized that we have so much knowledge and resources in regards to our genetic histories that we would be prepared to deal with them. And actually, with any child, biological or adopted, there will always be the potential for chronic health issues. However pretty early on in our marriage we decided against trying for biological children because we felt that the toll it would take on my body would be too much. I would have to stop almost all my prescription medications and this simply is not an option.

Fast forward to July 2010 when George and I realized that I had turned a corner Migraine-wise. I was functioning more like a "normal" person and though I was still very much affected by Migraines, they were much better managed and we both felt that we were in a place to start exploring starting a family through adoption.  We read books and we researched adoption agencies. We met with an adoption counselor at the beginning of September 2010 and officially started  the home study process. We attended classes; we completed piles and piles of paperwork; we had background checks completed; we had family and friends fill out extensive reference forms; we completed ten page autobiographies; we went through several interviews.  We had decided that we were going to adopt domestically and since there is a need, we decided we would adopt from the African American community. We attended a support group of families who had adopted transracially so that we could learn more about what our family would be like. We started to research baby items and did some renovations to our house that we had not planned to do for years down the road. Our dreams to start a family were becoming reality!

We knew that one of my Migraine triggers is not getting enough sleep, so having a newborn, George and I had made plans how we would manage. I would be a stay at home mom and if I had a bad Migraine day or week, we had child care lined up. With Migraines, we knew what to expect. If my preventative decided to quit, we knew it would be a struggle but we were willing to face it and work through it. We knew that we would have challenges that parents without chronic illness wouldn't have. However, we were committed to working through whatever my Migraine disease would bring.

But we were not prepared for Meniere's disease. My vertigo had started as we were working through our adoption home study process. In the beginning my neurologist had told me that the vertigo would be self-limiting so I was not concerned that it would affect my ability to become a parent. In December 2010 when my Migraines and Meniere's disease went from bad to worse, I got this horrid feeling in my gut that proceeding with the adoption process was not a good idea, but I could not accept it at the time. In early January 2011, we went to another adoption class as part of our home study. I remember taking rescue medications for my Migraine and medications for my vertigo just to get through the four hour class. I was miserable. Over the next couple weeks, the voice inside me saying that we should not pursue starting a family got louder and louder. George and I had a painful conversation where we both pushed through the denial and realized that starting a family is not for us...not know and most likely not ever. We agreed that if we would ever start the adoption process again it would be after having at least two years of my health being reliably manageable.

When we decided not to proceed with starting a family, I was unable to process the emotion. But now, the grief has hit me with a sledge hammer.  As I am trying to come to acceptance of the chronic and disabling grip that not only Migraines but now Meniere's has on my life, I am having to accept that perhaps I am not going to be a mom after all. I love George dearly and I know that my life with him will be full of joy, laughter and fulfillment. But, I am sad beyond words that I will most likely not have the experience of parenting my own child.

Someone said to me, "You are still young. You have time." I am thirty-one;  George will be forty next year. Yes. We have time. But, I'm not sure that it is about "time" per se. I feel that this is about what God's plan for my life is to be and I am starting to feel quite strongly that being a parent is not part of his plan for us. In my wildest dreams, I would never have expected I would ever say that! I feel I have so much love to give! Why wouldn't God want me to be a parent?  But I have to stop clinging to what I want and let go to what God wants.

Over the years, I have read and re-read a book called The One Year Book of Hope by Nancy Guthrie. The book is divided into fifty-two sections on different topics such as "Joy," "Storms," "Sufferers," "Why?" "Who am I?" ect. Each topic has five one-page passages on something related to the topic. I recently read a section called "Looking to the Cross." This time around, I had committed to reading the book straight through and that day I certainly did not want to read about the cross;  I wanted something comforting. So, I got to the devotional entitled "The Cross Calls Me to Humble Obedience" on pg 141. Ms. Guthrie wrote:
Do you think Jesus has called you to a job or role of service that's "beneath you" and an utter waste of your talents? Do you think you deserve better? Look at Jesus and see how he let go of the rights of deity to willingly become a slave... When you hear the call of Jesus to die to yourself, does it seem too much to ask? Look at the Cross. See the depths to which Jesus sank in obedience to his Father and the lengths to which he went to love. Then make your choice to follow him. 
Oh did this passage strike a cord. Do I think that my life right now is an utter waste of my talents? HECK YES! I was meant to be with kids. I was meant to work with kids. I was meant to be with people. I was meant to be a mom. Yet, I am in a silent house all alone left with not much to do but read and pray. Do I think I deserve better than a life struggling through chronic illness? OF COURSE!  I am really having to learn what it means to die to myself and to my desires. I must surrender to God my desires to become a parent because I know that is the only way I will be truly fulfilled. If I cannot let go of my desire to become a mother then I will never feel happy with what I do have in my life. Jeremiah 29:11 from the Bible says, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." I have to trust in that. And this is where I am.   

Friday, February 18, 2011

Take Action for Continued Funding for Migraine Research!

I may be too late in sending this post. Today the House of Representatives was supposed to be debating whether or not to make significant funding cuts to the NIH. This would severely impact those of us who would benefit from the continued research for Migraine disease. 

I don't know if it is too late or not, but please go to the Alliance for Headache Disorders website to take immediate action. There is a letter that has been pre-written with a place for you to write a personal message if you so wish. It is extremely easy to fill out the form. Even though it is already the end of the day, it is never to late to express our desire to keep funding for Migraine research.

Another Chronic Illness? Really?

I believe it is common for those of us who have chronic illness to have more than one we are battling. Though Migraine disease has been the major chronic illness I have faced, I also have other health issues including  IBS, anxiety, environmental and food allergies, tachycardia, fibromyalgia and a history of asthma. But in the last few months I have been diagnosed with another chronic illness and it has completely turned my life upside down.

In August 2010, I started having symptoms that were not usual for me, but not alarming. I was more fatigued than normal and quite dizzy. As a rule, I have a low blood pressure and if I am not well hydrated, I can get these symptoms, so I attributed them to lack of hydration. However, by September, the symptoms became more severe. I would be woken up in the middle of the night with symptoms that made me think I was dying. 

As an aside here, I loathe the emergency room. After years of trips to the ER,  I feel that the doctors know much less about my body than I do and I simply do not trust them. So, I fought my husband when he wanted me to go. I wanted to push through and wait it out. Finally at 4am, my condition had deteriorated so badly that he was unable to get me to the car and had to call an ambulance. Later, we found out I was suffering from vertigo and learned from a health professional that it is one of the most common reasons people go to the ER because it can be so severe they think they are dying. So, I was not alone nor was I being dramatic.  

I started out seeing an ear nose and throat doctor who was convinced my vertigo was related to my Migraines. Since I was not experiencing Migraines at the time, it did not make sense to me. However, my ENT insisted that my Migraine specialist be brought into the conversation. Dr. Robbins, my Migraine specialist, sent me to a physical therapist for vestibular rehabilitation to help treat the vertigo. However, I was discharged after my second visit because the PT felt my case of vertigo was "special" and that I would not benefit from the therapy. 

I had also started to develop symptoms in addition to the vertigo. I noticed that I would have intermittent hearing loss in my right ear. It felt as though I was hearing underwater. I felt fullness in my ear and had ear pain. Later I started to get ringing (tinnitus) in that ear as well. And then I started falling down. I have since learned these are called "drop attacks". It is nothing like passing out, which I have had my fair share of. I am conscious, and fall straight to the ground. It is almost as though my body has forgotten where it is in space. I have my fair share of bumps and bruises, but thankfully have only hit my head once.

After an MRI, audiological examinations and other tests to rule out certain forms of vertigo, my ENT began discussing Meniere's disease. Like Migraine, Meniere's does not show up on a test or a scan; it is something that is diagnosed over time mainly based on one's symptoms. And I have all of the symptoms.The National Institute of Deafness and Other Communication Disorders (NIDCD) has a wonderful information on Meniere's Disease.  Meniere's is a disease of the inner ear that eventually takes one's hearing. Usually Meniere's is unilateral (in one ear), so when I showed up at an appointment with my ENT saying that I was noticing intermittent hearing loss, and ringing in my other ear as well, she became quite alarmed. She expressed that having bilateral Meniere's disease is an extremely disabling condition and felt as though I needed to see a specialist, a neuro-otologist to determine what is going on. 

I saw the neuro-otologist, Dr. W, late January 2011 and I really like him. When we discussed my Migraines, he actually got on a soap box saying that not all Migraine specialists are good eggs. It was so exciting to hear a physician know that and actually advocate for his patients to get the best care for their Migraines! Anyhow, after taking an extremely detailed history, Dr. W discussed how Migraine Associated Vertigo and Meniere's disease are on a spectrum. In the beginning, my symptoms seemed to be more Migraine related even though they occurred in the absence of Migraine, but given my current symptoms, he believes that I probably do have Meniere's. He said he wants to hold off judgment on whether I do in fact have Meniere's in my left ear, but he feels that I most likely have it in my right ear. 

The unfortunate part of this chronic illness is that there are not any good treatments out there for Meniere's or really for vertigo. I have an acute medication, diazepam, to take for my vertigo, which helps, but unfortunately sedates me for 6+ hours. I have tried oral steroid, prednisone, with no success. On February 8, 2011, I had an outpatient procedure called intratympanic steroid injections. Dr. W injected steroid through my ear drum in hopes that this would help my Meniere's symptoms, and more specifically my vertigo. Unfortunately, this painful procedure has not help me at all. According to research, the percentage of people who are helped by this procedure is low, but as there is no risk of damage to the ear, it is a procedure worth trying. The next level up would be to inject an antibiotic, gentamicin, into my ear, but that has a high risk of taking my hearing. Currently, I only experience intermittent hearing loss and my base-line hearing is quite excellent. So, if we decided to take this step, it would be quite a risk.

Unfortunately my Meniere's symptoms have become disabling. When vertigo hits me, I am unable to walk, focus, concentrate, or see straight. And of course the episodes of falling down are quite scary. The thought of having Meniere's the rest of my life and not knowing how disabling it will become is frightening. I am just coming to terms with what having Meniere's, another potentially disabling chronic illness, means in my life. I guess it all comes back to the word I wrote about in my last post, acceptance. I am not there yet. Actually, acceptance in regards to the Meniere's disease seems far away. There is so much I don't know about Meniere's and therefore I have a lot of fear. So, I need to educate myself more and next on my list is to seek out others who have Meniere's disease. As I have found the community of Migraineurs has helped me along my path, I hope that meeting others with Meniere's will help me on my path to acceptance.

Thursday, February 17, 2011

Change Change Change

As I mentioned in my last post What Happened to Me in 2010?, for 8 months in 2010, I had incredible improvement in the frequency and severity of my Migraines and additionally the daily headache I had had since October 2005 had ceased. Unfortunately all that has changed.

From October to mid-November 2010, I had a 3 week spell without one Migraine! This had been the longest I had gone without a Migraine since they started in 2005. So, when I got my menstrual Migraines mid-November, I expected that once they were over, I would be Migraine-free again. But that ended up not being the case. Triggers that had not bothered me for months were triggering Migraines almost daily. At first I thought it was just a fluke. But come early December, when I was not improving. I called my headache specialist, Dr. Robbins, and he increased the dosage of my Migraine preventative, Gabitril. A week later after no improvement, he had me come into the office for a round of Botox and further increased my Gabitril dosage. Gabitril had quit on me in 2009 after 5 months of moderate improvement and  Dr. Robbins had warned me that this may be happening again. Despite the Botox and the significant increase in my Gabitril dosage, I did not see any improvement.  My Migraines quickly became constant and severe.

When I saw Dr. Robbins mid-January 2011, we tried another round of Botox. However, we discontinued the Gabitril. The plan was that after a few weeks break, my body would "forget" the medication and I would be able to retry it with the same results. At my February 7th appointment, I received more Botox and we decided to restart the Gabitril. Currently I am taking the dose that I had so much success with last year, but I have only been at this dose for a week. I have a lot of hope that I will find success with the Gabitril again. Last year when someone asked me what had caused such significant improvement, I would say that I thought it was a combination of all I was doing: medications, supplements, Botox, food changes and exercise. I still believe that all those things were important puzzle pieces in my improvement, but obviously Gabitril was the glue.
The decline of my Migraine status has been quite disheartening. However, I have been diagnosed with another chronic illness that has been wrecking just as much if not more havoc than the Migraines have. I will share about this new adventure in my next post.

From what I have experienced this last year, I want to share with you, dear readers, a valuable lesson I learned. When I had such success with my Migraines for eight months in 2010, I thought I had turned a corner and was home free. I finally had a new life with better Migraine management. My life was not Migraine free and did not resemble my life pre-disabling Migraines in the least. However, my life was finally not driven by Migraine. It was a life I had dreamed of when my Migraines were debilitating. Even though I knew it was a possibility that the Gabitril would quit again, I felt as though I had all those other things in place that would keep me from falling back to the debilitating/disabling place that I was in for so many years prior. I believed that dealing with disabling Migraines would be part of my past and never my future. The shock and grief of being here again is quite difficult. Last night, in Migraine Chat , which occurs every Wednesday at 6pm CST hosted by Diana Lee at Somebody Heal Me, the word acceptance was brought up. Before I had the eight months of improvement in 2010, I had come to a place of acceptance of the role Migraines had in my life, but now I am realizing that I have to do it all over again. I have to accept that they will be something I will always have to deal with at some level. I will never get away from them. Sometimes I will have less limitations and sometimes I will have more.. And I believe once I am finally able to accept this, I will be able to move through the grief and fully embrace what God has placed before me.

Tuesday, February 15, 2011

What happened to me in 2010?

So much has changed in regards to my health since I was last blogging regularly in 2009. Actually, the majority of 2010 was a much better year for me Migriane-wise as I will share in this post. I was doing so well that I left most connections I had to the Migraine community in the dust. Simply speaking, I did not want to think about, talk about or read about anything Migraine related. On one hand it seems very selfish on my part that I would abandon all the avenues that had got me through the rough spots and I am sad I did. But on the other hand, it only makes sense that after years of being chained to Migraine disease, if I had the chance to have a break, that I would want to take it. So, I hope that as I re-join the community I used to be so active in that my story of success with Migraine management will encourage those of you who are wondering if it is possible for someone who is severely disabled from Migraines to ever find relief.

The end of 2009 was a nightmare.  I was hospitalized for another two weeks in October 2009. After realizing he had no clue what to do next, I fired my headache specialist at Diamond Headache Clinic. A phone conversation with Migraine advocate, Teri Robert, helped me decide to travel to Dallas, TX early December 2009 where I received treatment for a week by Dr. John Claude Krusz at Anodyne Headache Clinic. Late December 2009, I started seeing a headache specialist here in Chicago-land, Dr. Lawrence Robbins at Robbins Headache Clinic

By February 2010, thanks to Dr. Robbins, my life was starting to change. It was a slow process. At first I could not have hope for the new treatments I was doing such as Botox which I started that first appointment in December 2009. Up until that point, I had tried so many treatments that had failed that I didn't really expect much success. Dr. Robbins also decided to do a second trial with a preventative medication I'd had moderate success with in the past, Gabitril. I also started a natural Migraine preventative, Petadolex (butterbur).  In March 2010, I started to take a low-dose estrogen plant based birth control pill to enable me to go 3-4 months between periods so that I could avoid the horrid menstrual Migraines as much as possible. Late May 2010, I met with a nutritionist who did an MRT blood test and created a LEAP food plan. The blood test found that I have many food sensitivities that were triggering my Migraines. I started a food plan that included a drastic elimination diet and I currently eat whole foods (mainly organic) that are unprocessed and have no preservatives. After years of being mostly homebound, it took a while, but my stamina gradually improved. By June 2010, the constant daily headache that I had had since October 26, 2005 ceased to be daily. My Migraines stopped becoming as severe and as frequent. By my standards, it was a miracle.

A new life emerged. I read back on old posts I wrote on this blog and cannot believe that every dream I had for my Migraine disease management had come true. My Migraines were still present as were my headaches, BUT they were manageable and I was a functioning individual contributing to society! I say a new life emerged because it was not like the one I had before Migraines/headaches were disabling. Migraines would/will always be a part of and affect my life, but the limitations on my body were significantly decreased. I started volunteering. I took my two year old dog, Zoe, to dog therapy training classes and we passed the test to become a therapy team. I started reading with first graders, using my speech language pathology background to help them along. I also started talking with an organizer at my church to be a part of the hospital visitation ministry. Finally, the most exciting news was that George and I had decided to start a family through adoption and we were knee deep in paperwork and classes.

My life had completely changed as the grip of chronic illness seemed to have relaxed its hold. Though I am currently not doing as well as I'll discuss in my next post, the fact that I had eight miraculous months of improvement showed me that anything is possible. I never believed that my Migraines could be so manageable and because they were for so many months, I know they can be again. Hope is never lost, even though it might seem that way.

Friday, February 11, 2011

Does Chronic Illness Define Us as a Couple?

I have a picture of a 25 year old woman with long brownish blondish hair dressed in a flattering black dress standing next to a 33 year old man dressed in a polo shirt and slacks. He has his arm around her and they look so healthy, happy and in love. This picture was taken five and a half years ago. It was the first time I took George to Kentucky to visit my parents and we were on the roof top of a fancy restaurant. I sometimes find myself lost when I look at pictures like this one.  I struggle to remember who George and I were then and what our relationship was like. The shadow of chronic illness has been over our lives for so many years now that it is hard to remember us then. If I have trouble remembering who we were before, does this mean that chronic illness is all we are as a couple? Does chronic illness define George and me?

I met George while volunteering at our church's food pantry in August 2004. We started dating in March 2005. Our first kiss was on a bench underneath a gorgeous willow tree. George proposed in October 2005.  As a couple, we often argued who was nerdier. Was it me with my Star Trek Next Generation addiction or George with his Star Wars fascination?  We could usually be found taking walks outside. We spent a lot of time with our friends and went to church twice a week.  And we loved going to Richard Walker's for George's favorite meal of the day: breakfast. In fact, the morning of the day he proposed, the waitress at Richard Walker's commented on how wonderful it was to see a couple so in love.  Migraine disease hit me in a severe and disabling way ten days after we got engaged. I was hospitalized twice during our 8 month engagement and lived with my parents in Kentucky for almost 2 months as I was too ill to be taken care of at our home by George who had to work full time. From the day that Migraine disease hit, George became a caregiver and I became a dependent partner. We have operated like this much longer than we ever operated as a "normal" couple.

Having a caregiver/dependent relationship changes and sometimes trumps the husband/wife relationship we have.  When a severe Migraine or Meniere's attack hits, George steps in and does everything I would normally do around the house and more. He is a very compassionate caregiver in that he wants to make sure I'm as comfortable as I can be and attempts to meet the needs I have.  When I had a healthier eight month spell in 2010, it was actually a struggle to learn how to be a husband and wife. In our whole marriage, I had never been that healthy and we both had to figure out how to navigate and adjust to a new dimension. George would clear my plate after dinner and I would get irritated because I did not need nor did I want him to do that anymore. As I said it was a learning process for the both of us. Chronic illness had/has determined how we interacted with each other.

As a couple walking through chronic illness, we don't spend as much time with friends anymore as it is difficult for me to go out or to even have people over very often.  Going to church as a couple is a luxury that happens all too infrequently because the sound is unbearably loud even with ear plugs. We still try to go out to breakfast when I'm having an okay morning. In the summer time, a walk, even a short one to the mailbox and back, is a bookend to our day. We still indulge in our nerdy sides as he watches Cartoon Network's "Star Wars: The Clone Wars" every Friday night. And as I often have trouble falling asleep due to my pain, we play Star Trek Next Gen episodes on the tv to lull me to sleep.

Because chronic illness puts so many limitations on my body, we don't do the typical couple activities such as going out on date nights or to the movies. However, these limitations help us appreciate the little things and I believe we enjoy them more than the average couple might. When my head can tolerate it, we sing songs while we get ready for the day. Even though George sings way off tune, we still have a blast.  Impromptu dance sessions in the kitchen are a frequent occurrence.  We make funny faces in the bathroom mirror and laugh at the dogs' antics. Chronic illness has taught us not only to search for the little joys in life but also to be more positive about life. When we make plans for something like a vacation, we always have contingency plans set up. And if we have to use plan "b" or "c" it is not a disappointment...just a different plan we get to enjoy.

I have always struggled with the thought of my chronic illnesses defining who I am as I wrote about in my post taking ME out of MigrainE, but not until writing this post did I realize how much it also could define George and I as a couple. But, no, chronic illness does not define us as a couple any more than it defines me as a person. It is part of the journey we are on that has shaped our path and our experiences, but deep down we're still the same nerdy, fun-loving, goofy couple we always were. The essence of who we are remains. And even though I sometimes have a hard time remembering some things about George and I pre-chronic illness, I am thankful to realize that chronic illness is not who we are.