7-31-16 July Journal

Celebration – – – – this weekend I celebrated being able to spend time with my family and friends.  Having a child live out of state and not being able to see them often makes every minute of time that you get to spend with them a celebration.  Being able to add their other sibling to the mixture, as well, as their godparents and spouses was a fantastic time.  You don’t have to have a huge party with presents to have a celebration.  You can just bring together family and friends and spend time with them and let the celebration happen.

How you doing?

We see so many social media posts about how are you doing? Everyone seems to be concerned about everyone else now that a pandemic is here. What about two months ago when life was carefree? Did you see as many “how are you doing” posts? Those of us with chronic invisible illnesses understand this. This really is a trick question for us because we never truly know how to answer. We give our pat answer usually of fine, just fine when truly our heads are screaming, bodies are aching, minds are blowing up and all the other wonderful symptoms we are feeling. But what if now, when we see these “how are you doing posts” we truly answered. What is everyone truly answered? I am sure there are many people who always felt their lives were “put together” but are struggling with the social distancing. As I see so many cars driving around and different cars alone in my neighbors driveway, coming and going, I know not everyone is following the Governor’s rule. Maybe those with the chronic illnesses have a one up on knowing how to social distance themselves but it doesn’t mean it doesn’t hurt. It took me years to learn and believe me I am still learning how to deal with all my illness has thrown my way. By this I don’t just mean the pain and all the different symptoms, I mean the social distancing I had to learn when I had to say no to so many events I wanted to attend but my illness said no. So this pandemic is a learning curve for all of us. Will everyone get the lesson?

And you say it’s just a headache.

It’s just a headache….no it’s chronic migraine….take some Tylenol you will feel better….you don’t understand how many pills I take, have taken and failed and how much pain I still have…it’s mind over matter, it will go away….no I have had this consistently for years going up and down in pain levels and some days the pain is too much to bear…..it’s all in your head….not really but many of the symptoms relate to my head – vertigo so bad when I roll over in bed I feel like I’m falling out, ringing in my ears so loud it breaks my concentration, the feeling of ice picks being jabbed into the back of my head over and over, a vice grip being tightened on my neck, a sledgehammer slammed onto the top of my head, numbness over the entire right side of my head, face, tingling down into my neck, arm, losing the ability to have a thought pass your brain twice, coming up with a simple word, need I go on, it’s only a headache, lay down, oh yeah, light just the thought of it squints your eyes, loud sounds echo in your ears, anxiety increases but Advil will help if Tylenol doesn’t, maybe a bag of frozen peas leaning over the sink will cure you. Need I go on, what are you complaining about, buck up, it will go away, it’s just a headache…….

A new option

At a recent Neurology visit I was given a new option for treatment of my chronic migraines. My visit was with a new Physician Assistant, she took her time speaking and examining me. She listened closely, especially when I discussed the fact how much I loathe taking medication. With my migraines being chronic since 2004 I have been searching for some type of relief through chiropractic, acupuncture, neurology and many, many medications. Medication taken daily for preventative and for severe attacks. A recent preventive Aimovig which the first two months gave me a brief look back at how life was but alas even with doubling the dose the migraines have increased in amount and in intensity. So back to this visit and my new PA listening closely, as a result she suggested a new device called Nerivio. This device works as a distraction to your mind as it places a tens like feel onto you arm (which you increase the intensity up to just before painful) for a 45 minute treatment and at the end of the treatment the goal is your migraine has dissipated and you go on without taking any preventatives. I had a “trial” in office and within the five minutes of wearing the device my level 7 was gone. Because the treatment was so short within the half hour my pain was back but I chalked it up to no real treatment. I, of course, said sign me up. Presently the deal until December 31st is a free machine with 12 treatments and then $99 for an additional 12 treatments (not covered by insurance to my knowledge). With everything I have tried to this point and such immediate relief, I felt this was definitely for me. No medication, just a device to wear on my arm easily covered by clothing and the ultimate goal relief. Fast forward to the first treatment, after receiving my device, life became too hectic to even try it with family Christmas happening but after our weekend festivities prior to Christmas, I decided on Sunday to give my Level 8 migraine a go with it. I lovingly took everything out of the box and set myself up for my first treatment. It was easy to do and I had already downloaded the application onto my phone. My first issue was connecting the device to my phone but after a few tries I was able to do so. I set the intensity up to 18 (I was informed 14 up to 40 was normal) and off I went with my first treatment. I just went about my normal routine and before I knew it 45 minutes had flown by. After stopping, my level 8 was down to 1 very tolerable and things seemed awesome. Over the next half hour I noted my neck was really hurting and thought I guess my head hurts so much all the time I don’t realize how much my neck really hurts. (I was rear ended in a car accident and had whiplash as a result of the injury). Then over the next hour or so I noted a new type of migraine creeping over my head and I ended up with an entirely different migraine that was worse than the one I initially was treating. I chalked all of this up to the fact that maybe I waited too long for this treatment because of all the festivities and went about life. The application asks you for surveys when you first start the treatment and then twice after which I completed. They ask about stress but I wish they asked about anxiety level which is different to me. My head calmed down to normal roar and then Christmas Eve I woke up with another Level 8 which I felt required another go with a treatment. I started the process again and ended up with the same results with feeling very anxious overall. I knew I had places to be on Christmas Eve, so abortive medication was added immediately. Now I ponder the saying third time is a charm since I ended up with neck pain and worse migraine than before I performed the treatment. I am not sure if the neck pain is related to the lessening of the initial migraine and I just don’t realize it is there but the additional migraine is really depressing. I was so hoping a new option was going to bring about as much relief as the first dose of Aimovig offered. I shall not be deterred but continue in my search and yes I will give it the third time the charm but giving my body a bit of a rest prior to doing so.

And she

And she pushes forward no matter how she feels. It’s not always what she wants to do but she puts on her smiling face and pretends everything is fine. She feels she has no choice and she wants to be left alone but that’s not what is in her future. Pain surrounds her but she doesn’t show any signs of discomfort. This is her life day after day and she knows nothing else.

It giveth and it taketh away……………..

A migraine giveth and it taketh away. It giveth you pain beyond your wildest dreams and taketh away your life leaving you no dreams.

A recent new medication of Aimovig started with a first injection July 24th changed my life. It initially changed my life by giving me a peak back at it. The first month I had approximately three weeks of relief crashing back when it came to the weekend before my next injection. The second month gave me almost a full month of relief but then come September I received no relief, seemed like even more pain. What I have come to realize is that I am back to square one of learning how to deal with migraines. It amazing how fast you can forget but when you have the pain day in and day, it gets to be part of your daily life and you cope, overcome, give up, do whatever daily because it is the same. But when you actually get to experience days with low pain levels down to a 1-2 which as a pain survivor feels almost normal, when they come rushing back and controlling your every move, you have to adjust yourself back to your “unnormal” life. The Chronic Illness life. The one without not knowing what will come next and just tempering yourself to know what pain level you will be dealing with. So before October injection I requested my dosage to be increased by my Doctor who had freely informed me not to give up if it doesn’t work when I first try it and there is always an increased dosage to try.

Well, unfortunately, double the dosage has done nothing for me yet at this point and I’m almost two weeks into this new injection. I don’t want to give up so easily but the little bit of life I was given, the glimpse of what it is like to be “normal” is now so hard to get out of my head. I yearn so much to be that person again. I know it exists but yet my body keeps it away from me. Instead, I crawl back into the dark of the chronic world I don’t want to live in.

So migraine giveth and it taketh away. Not that we want it to.

The Dark

To most the dark is when the sun goes down, the light of day fades away, the stars and moon come out and the dark over takes the earth. I view the dark in a totally different way. To me the dark is when the pain takes over and my body is incapable of doing anything but laying down, moving only from bed to couch. There is no urge to want to eat, drink or move. The pain just rolls from one side of my head to the other and as I move the vertigo just takes over. With all of this nausea moves in with my stomach as every part of my body tries to get in on this so called party. Next moves in anxiety as you feel anxious about every move you want to make and how it going to effect each portion of your body. Then depression joins in as you just want to crawl into a dark hole and let your pain take over every inch. This dark is hard to fight as the pain is so convincing in keeping you down. You feel no want to interact with life and this only makes it worse. But the fight is difficult when all your systems are down and out. But you have to do it, you have to move no matter the pain, you have to trick your brain to think about something else. You have to, you just have to or the dark will take over.

You’re Gone

Today is your 99th Birthday. Your wish was to live to 100 and you lived to 98. My heart is full. Full of love, great memories of a Mother who gave unconditional love along side of sadness of a daughter who will no longer experience it. This is my year of firsts. The first Thanksgiving without you, the first Christmas without you, the first New Year without you, the first Mother’s Day without you and the first birthday without you. Up until Mother’s Day I was in denial. I blocked my brain thinking I was a bad daughter just not visiting you at the Nursing Home even though in reality I knew you were gone, hell, I attended your funeral. It was my way of coping. Now I am angry. Angry I am alone. You and Dad are gone and I have no parental support. It doesn’t matter how old you are, you still want your Mom or Dad to be able to give you advice. I know I have to experience all of this. It’s the way of grief. You both taught me all the aspects of life and now you are teaching me the hardest one as I act like a toddler kicking and screaming all the way. The adult in me in numb and I know I will never be the same.

So Happy Birthday Mom, have a wonderful heavenly celebration with all the loved ones who have gone before you. Those you haven’t been able to celebrate with in years and you mourned for, the same as I mourn for you. We will meet again. My love will never leave my heart. The year of firsts will be filled with denial, anger, numbness and eventually acceptance. But love will never be taken from me.

Night time prayer

It’s so nice when your body allows you to fall asleep after a toss and turn session. Yet rather disturbing two hours later when pain jolts you awake and the night sweats take over. This is when you lay quietly questioning your life and start your night time prayer. You pray for the sweating to stop. You pray for the pain to subside and you pray for sleep. When none of this happens, you pray for it all to end.

When you don’t know where to turn

When you don’t know where to turn because your emotions run rampant and your body refuses to cooperate with what your brain wants to accomplish, you have to make a choice. This is were the fact that advice is much easier to give than it is to take and apply to your life. Learning about being empathic, I struggle with the overwhelming emotions going through my mind and body as I truly try to understand all the signs I am being given. I have always been the one who has put others before myself, making sure their feelings and emotions are always on a higher level no matter how mine would feel. I have felt the illnesses of others in my own body at the same time they were dealing with it. I have also had dreams which have predicted family pregnancies, as well, as death. Not as explicit as who exactly is going to be pregnant but maybe I just don’t have the talent to interpret what I am seeing. Last night I had a dream about a tiger biting at my hands and trying to attack me yet I prevailed and got away. I was watching the news this morning to see a clip about a zookeeper who was attacked by a tiger yesterday. The hardest part is the fatigue of my body. Presently I struggle to move, think and stay connected.

I know there is all kinds of advice and knowledge I can pursue about this. My migraines rage at this point only offering more pain and fatigue and symptoms to my body. At times I am almost afraid to stop and just think, I am not sure I want to hear what is going to go through my brain. So I don’t know where to turn and I will do something I am familiar with from my early migraine stages, shut down, withdraw and become quiet allowing words of paper to be my outlet. Words which I hope will make sense to me at some point in this never ending journey of life.