I woke up today with blood in my pajama bottoms…oh great my period is here. This is only my second period in I’ve has in 30 years. I was on the pill (birth control) for 30 years and never had a period. Strange I know. It was medically necessary for me to be on some time of birth control. I went off the pill 3 months ago because I thought it could be contributing to my migraines. Needless to say I’ve gained 7 pounds…I am in peri-menopause. Joy. My recent periods, this is my second, have not been fun. The last one lasted nearly two weeks. I’ve had PMS symptoms for the last week. I’ve been bleeding steadily. The PMS symptoms are not good for my migraines. As far as I know, and from what I’ve been told, my migraines are not associated with my period. Which, if my migraines were connected with my time of month, they say that migraines could possibly go away after menopause. But, this I doubt will happen for me. I feel migraines saved my life and I’ve come to the realization that I may have this disease all my life. How disappointing I know. You’d think. Well, I am ok with this. I have had chronic migraines disease for 11 years…I have learned how to live with it and I have arranged my life and live each day, in a way that will decrease my migraine episodes and lower the amount of time it lasts. I have been using this new AWESOME electronic device. It’s called Celafy (celafy.com). I start by cleaning my forehead and then I put the conductor tape on my forehead. The small 2 inch device (looks like a triangle) attaches to the tape and thus places the devices electrodes in place. There are two settings on the device I have. For an acute migraine, during an attack, the device session is for or an hour. You do this when you need it. The other setting is for prevention, which this session lasts 20 min and you do this every day. Let me tell you this… I am so excited about this. I was in the emergency room a few weeks ago… I had “breakthrough pain” that wouldn’t go away with the meds I have to take at home. Now, know this; when I have break through pain and it turns into a full blown migraine, the migraines I have will last a minimum of 2/2.5 weeks to 3 months (at least that was my longest stretch). You won’t believe this…! This recent migraine episode lasted 48 hours. Holy crap that is amazing. That has not happened in 11 years. They did give me a different med cocktail in the emergency room from what they usually give me. That being said, the device, Celafy I was telling you about, I feel is kicking ass! So perhaps the new emergency med mix and the the Celafy device are really helping. This would be a fucking miracle. Know, the down side of the Celafy device is that it’s not cheap…my insurance does not cover it and I don’t think Celafy (the co.) takes insurance. You need to get a script from your doctor then you order Celafy online on their website (Celafy.com). For your information, they make three different Celafy devices. They make one for acute pain, one for chronic pain and one that treats both chronic and acute. I need the latter. It will cost me $499.00. If this therapy continues to improve my migraines then perhaps I can continue the use of Cefaly and get off some of my meds…in particular the steroids and narcotics. I do understand, fully, that the medication I am taking may shorten my life. I realize the pain meds and steroids I am on could lead to an early death, or an overdose. I am ok with this. I am at peace with this. Truly I am. My husband and I have discussed this in length and often. He and I agree that it’s best for me to have a life (vs being in a dark room for the rest of my life) and to live each day the best I can. And if these treatments work and provide this for me, then I need to have them. Therefore we justify the therapy. I want to my enjoy my life and all its memorable moments and awesome experiences. I want to feel the joy of helping others. I want to experience my marriage grow even more than it has. I want to live into mycelder years with James. James (my husband) is extremely supportive. Thank God. Yes, I understand how lucky I am to have my husband as my care taker. He is on my side 247. He takes me to the ER every month. He comes with me to my doctor appointments. He is always empathic and he suffers as along side of me. Yes, those that love us suffer deeply thinking of our wellbeing, when we are suffering they get concerend. James and my friends and family are always worried. Always asking me how I am doing and feeling and if I have had a recent episode, which I mostly answer yes. I feel terrible that my group of loved ones suffer in sadness and worry because they are so concerned about me. I am grateful to have such support in my life. On the other hand, I have lost relationships. There are people in my life that cannot deal with my disease and “don’t want to be bothered”. They never call to ask how I am doing. They have no idea how I am doing. How sad. I live in a different state then my family. I see them every two years for about 4 days. When they visit, I stretch my limits. I do things with them while they are here but I always get a migraine after they fo home and I end up in the emergency room. When I go home to visit I always end up in the closest ER, during my trip and also afterwards when I arrive home. That really sucks. You can see how I don’t want to go home. I did not have the best childhood and I rebelled quite a bit. Always getting in trouble was my way. I will go into detail, in another blog post. My experience as a youth contributes to my migraines. I’ve have been seeing therapist for several years, on and off. It’s like my memories are a non-stop Ferris wheel in my head. Sometimes I can’t stop thinking about it. Today I am feeling OK. Migraine is at 3. Or what I call a headache is for anything that is below a 5. I usally go to the emergancy room when my migraine is at a 7. I don’t wanto wait until it get’s higher, because that just meas more pain and will intensify while waiting to be treated at the hospital. I don’t want to eait until I am above a 7. I’ve been there to many times and it scares the hell out of me.
My local emergency room staff know me well. The doctors there know what I need and they treat me as quickly as they can. They always give me the medication cocktail I need and they listen to what has worked for me, what has not and what I think I need during the visits. I know what works for me…I know which meds will not give me a rebound headache. Have you experienced that? Oh jeez, that can be more severe pain then the migraine itself. When I go to the ER I feel at home. I know that’s nuts, but I know they will help me and bring my pain lower so I won’t continue to suffer. Rarely does my migraine go away after treatment in the ER. The meds wear off and the pain is still there. The pain is more than often decreased. What do I do when this happens, what can I do? I go see my doctor and she up’s my meds. Fortunately, when I feel better we lower the dose back to where it was. I do not feel sorry for myself (well not all the time) and I do not want pity. That does not make me feel good. But, on the other hand I wish for, want and need the support of my circle. My friends and my AZ family are amazingly supportive. This is the group that worries about me. I hate,..well that’s a strong word, to be a burden on anyone. Sadly, I feel I am to my husband. For the last 11 years, my husband has put his dreams on hold. He is so busy taking care of me and his worry causes him stomach ulcers and stress skin disorders. Did I say he’s amazing? Migraines saved me from possible death…at the youthfull age of 35. I will detail this further as I continue to write this blog. They are a reminder to me to stay calm, be at peace always and find relaxation in the chaos of life. I am proud to say I have achieved this, but that can come and go depending on how much stress I am feeling. Here’s how I feel about having chronic migraines…they are not terminal…unless of coarse you have a diagnosed medical condition that is causing migraines. Migraines will not kill you (with the exception mentioned above) and frankly I find relief in that. If this disease is the only disease I have in my life, I am super fine with that. So many people are struck with illness at young ages. It can ruin their lives. Or people wait until they have something horrible happen to them to make changes in the right direction…like me. I thought I was kicking ass in my 20’s and mid 30’s..but all that energy and stimulation I had and all the roles I play, got the best of me.
I have to try and relax now. This is the latest I’ve stayed up in months. It is 7:00 pm. I am normally asleep on the sofa anywhere from noon-3:00 pm. My husband wakes me up for dinner. I eat on the sofa, put my plate on the ottoman and go back to sleep and sleep all night. My days last from 5:00 am to about 2:00 pm (on average). That’s 9 hours of time that I have to do what I need to do. Sounds impossible? Ha! – I have found a way to make this work, through trying all sorts of ways for the last decade.
I know this all sounds shitty and I don’t want you to be sad. Like I have said before..I am the most positive person I know. I find the silver lining in just about everything. So don’t you worry about me. I appreciate your prayers and support. Any who, I must whine down so I don’t get off my routine. Until next time…may you see the sunshine in your situation. *With grace and ease proceed. Love, *Kimberly^