People in the ICI Community need to be more supportive and less judgmental of other sufferers

I was dismayed, sad and shocked by recent posts in the Invisible Chronic Illness Community bashing, criticizing and cussing out another in the community that found a way out for “himself” and he posted and shared his experience because he was finally able to break free from the vicious pain cycle and find happiness. I thought in this community and in the midst of all this blogging we were to share our experiences w/o fear of repercussion from another in the same category. I thought we were to be supportive of one another and encourage each other on, and then rejoice if someone has a breakthrough and feels better. I’m shocked at the lack of support I found. If a person was diagnosed with cancer and then was found to be in remission and for the time being considered “cured” that person would be ecstatic and that person’s supporters and other cancer victims would cheer that person on now that they don’t have to fear cancer anymore. Cancer is an Invisible Illness and often misunderstood and stigmatized as well. So when a fellow Migraine sufferer finds a way out of the dark tunnel we bash him? That would be like telling the cancer survivor “you don’t deserve to be better and happy-suffer with the rest of us and be ill!” Now I’m sure if you all sit back and think about it you would agree-we would not wish for a cancer sufferer to regain their cancer, so why would we want a Migraine sufferer to continue to suffer?

I have blogged about my 25 year journey with Migraines and how in May 2010 they progressed to daily intractable Migraines for no apparent reason, and I was not misusing my medications either. My panic attacks also got out of control as well as the Deep Depression I was in over the years long battle with what I then called the Migraine Curse and then everything else piled up on top. I felt like I was drowning in a deep dark abyss of pain and suffering. I had heart surgery Sept 11, 2009 for my long battle with an arrhythmia problem called SVT and by May 2010 I felt my whole world was caving in because one thing after another seemed to go wrong. I was battling Hypoglycemia and non-stop pain. I don’t have to tell all you Migraine sufferers out there how debilitating a Migraine is. You know all too well. But to recount my spells I can have them for 2-3 days at a time, get barely a break for a day and here comes another cycle. I have bad Aura’s prior and during an attack. I’ll  get a partial blind spot in 1 eye and very dizzy and easily confused and lose my balance often. I was already clumsy to begin with but the balance issue just gets worse with a Migraine attack. I get those lovey Icepick Migraines which I renamed Jackhammer Migraines-the stabbing pain behind and in the eyeball was so intense I’d think it would fall out if I bent over, or actually the pressure increased when I did bend over. I think whoever penned the name Icepick never had one in his/her life or they would not have labeled it with such a lame term. That temple on the same side hurts like heck and the skin will be sore to the touch all over my scalp. In fact after I get one of these Migraines I cannot not wash my hair until the pain subsides and even then it’s often too sore to wash-my scalp has always remained tender and sore to the touch and I’d lose more hair than I would have normally pre-2010. If I come into contact with anything artificially scented-someone wearing cologne, scented lotion, hairspray, cleaning supplies, candles, soaps-it will set me off. I am so hypersensitive to smells. Even the smell of Bacon is evil and I cannot tolerate it, but still my husband and daughter love for me to cook bacon, and I suffer afterwards.

I get very nauseous as a result and sometimes if I didn’t hurl into the porcelain throne I’d dry heave, which is worse than the actually vomiting. And I will often get chills or break out in a clammy sweat-it all depends I guess on how my internal thermometer wants to operate on any given day. If I get chills they seem to be deep to the bone and I put on my electric blanket for a couple of hours before I will stop shivering, yet my skin would feel normal if my husband or daughter would touch my forehead. Explain that phenomenon if you can. I cannot tolerate bright light or those artificial fluorescent lights. My husband will come home from work and complain the house is always dark because I live like a vampire-the curtains and shades will be closed and I will not turn a table lamp on unless I absolutely have to and I make sure it’s not too close to me. I have yet to find a dark enough pair of sunglasses to block the sun, that is how much the bright light hurts my eyes and adds to the pain. I cannot watch TV for long or read a good book, oh how I miss reading my books, because of the constant pain, the lack of visual focus and the side effects of the migraines is that I cannot comprehend what I’m reading most of the time because the confusion sets in. I have a ton of books and I love to re-read them but I have a lot of new ones I cannot even crack open and start and it’s like they are just begging me to pick them up, and I so miss my reading. I cannot stay on the computer long because the screen glare (even with the additional anti-glare applied to it) makes my eyes water, burn and adds still to the pain. How I’d love to go to the Movies when a new one comes out-but the noise and the moving screen would be too much. At home I can walk away every 5-10 minutes to recover and come back.

I turned my bedroom into a dark cavern I call my Fortress. Window darkening blinds, cark foam backed curtains, dark walls, dark floor, dark sheets-everything dark. My husband is not too happy it’s so dark but that one room is my Fortress-to slink away, curl up in bed with my ice packs and heating pads, turn on the fan and ride out the storm. I have my Migraine Survivalist Kit on my bedside table. A kit I put together over the past couple of years based on what I found were my essential needs during an attack to make it easier on me, and some various tips from other bloggers. So I only have to get out of bed to go to the bathroom or get more ice packs-everything else is within arms reach. I have an emergency kit in my purse for when I got out with my rescue meds and Migraine essentials. It makes my purse weight a ton and it’s a burden and my husband always loves to rag me about my “suitcase” but hey, I’m prepared.

And the noise. When I’m home alone during the day the TV is off! But when my husband and daughter come home the 1st thing they do is turn it on and ramp up the volume like they are deaf. OUCH! When I can get control of the remote (yep, good luck on that one) I will turn it down. Way down. When I use my iPod for meditation with my soothing meditation and Binaural Beats tones to relax and meditate during the pain I have it turned as low as possible where I can barely hear it. But then when my husband drags me out to his “playhouse” which is the Pole Barn to help him with his car project the noise is horrific and I must wear those noise reduction ear muffs. But the sound still comes through them. In the house when someone comes to the door the dogs bark like crazy and the one will howl like he’s on the hunt (he has Beagle in him) so imagine hearing that when your head is in excruciating pain along with everything else. Or when a major project is going on in the house and the spouse rips out the saws, electric drills, mini-compact air compressor, nail gun-HORENDOUS!! And then he likes to think I’m part male with as much testosterone as he and haul a monstrous humongous frig through the front door that barely fit through the doorway! Just to name one of many, many times I’ve been called upon during my Migraine pain the tasks to help him perform! But I’m not allowed to say “no” because he has no one else that can help him and then he rampages and goes on a tirade. Best to tough it out and suffer more later.

So I know all too well what goes into having Migraine Disease. And I was in such a dark hole of despair, anger and resentment I seriously considered ending it all. Yep, I actually considered suicide. Not once, or twice but a few times. My best friend intervened twice to stop me. The other times I  just chickened out and could not go through with it. But I was in the planning stages the other two times and I was so close to going through with it and I think that is why I told my friend so she could intervene and stop me. I was in such a dark hole of despair and thought I wanted to die to get away from it all, but deep down inside a voice told me NO. So that is why I believe I told my friend, so she could stop me.

That was a turning point for me. I realized that I had become so unhappy, bitter, angry, resentful, sad, lonely, lost, isolated and I blamed everyone including myself-even though I was doing everything right by avoiding all my triggers, trying to eat right, exercise and follow my doctors instructions and to not over-medicate to get caught in the rebound cycle. I was in such despair and mad at the world. I’d hear people make friendly suggestions to me on what they read or saw and I would blow up-I was so angry because I had done so much research all these years to learn what I could and even take info I found to the doctors to try out. I would think they were criticizing me for not doing enough when I was already doing more than my fare share. For someone to give me advice on a book to read because they just saw it online, but I had the book already a few years prior to their suggestion and I’m like “hey, I know this stuff already, so tell me something I haven’t tried cause I’m already doing it all”. I’ve done holistic, natural remedies, diet elimination and raw foods along with vitamins, supplements, massage, biofeedback, chiropractic, cupping, meditation, acupuncture, acupressure-the list goes on and on what I’ve tried to get these blasted things under control. And that’s not counting the traditional medical approaches. I’ve been to Diamond Headache Clinic in Chicago Illinois. All they did was experiment on me with drugs like the other doctors out here were doing. After a year of driving into Chicago with no improvement I quit going there. The drive was too much for me and would trigger a bigger migraine because my schedule would be so disrupted. I tried Botox in Dec 2010 a month or 2 after it was approved for Migraines. The insurance denied it because they were trying to argue it was NOT approved, then I had to have the doctor submit detailed documentation it was medically necessary due to the severity and duration of the migraines and to state even at that time I’ve tried everything else to no avail. The insurance company still found a way to deny it stating it was not covered under “preventive protocol” in their handbook and guidelines. So my husband had to fork out the THEN #1,500.00 out of pocket for the full cost and paid it monthly. I will never hear the end of that from him! I had written pre-certification from the insurance it would be covered, then they don’t and deny it. I fought the insurance and appealed, they still denied after all the documentation was submitted and I even went through the Board of Indiana Insurance appeals and they sided with the insurance company, of course.

So that added to the stresses mounting up on my marriage. I was unemployed and getting temp disability at that time. My husband puts a lot of importance on money and when he had to fork over that amount it just put a bigger strain. He could not understand for one how bad the migraines were even though he saw me in bed with ice packs and in a pitch black room, and all the doctors I’d been seeing and the new medications to try. Even telling him how much pain I was in with all the other effects of the Migraine, and still he doesn’t get it. Then I’m not working which is a big no-no with him. He kept railing on me to get another job so I can contribute. It was a sin to him that I was not bringing in a regular paycheck. When I applied for SSD he was against it saying I’d never get it and basically implying I’m not that sick. Yes I was denied the 1st time because they do that to discourage people. They don’t want to pay out anything unless they have to. So I was told “I told you so” too many times to remember. I appealed my denial and got an attorney that deals with SSD appeals. He would not take payment unless I won. He worked hard on my case and gathered my long extensive list of medical records from all my doctors over the last several years. He said I had a good case. My spouse was still not supportive and still ragging on me to get a job and give up on the appeals. When I had my appeal hearing my best friend drove me because again I was not safe to drive myself. At the hearing my therapist showed up to testify on my behalf, she felt so strongly for me. I did win my appeal and got my back pay and my monthly benefit. All my hubby said was that I was “lucky”. So that is the support I’m dealing with while I’m going through this ordeal-no support from the spouse I have to get it from other sources.

I was hospitalized in August of 2012 for a week. That was my turning point. With intense therapy I realized I could not let my negative feelings rule my life as they were making me more miserable and contributing to the pain, stress and suffering I was enduring. I realized through counseling that how you perceive things in your mind and how you process them effects the body as well. So if I’m all stressed out and negative it adds additional stress to the body and therefore increases the pain because that is all I’m focusing on. I was so intent on focusing on the pain and how miserable I was that I blocked everything else out. No wonder people would not listen to me anymore. Who wants to listen to someone complain all the time and being negative about this and that! I couldn’t blame them when I stepped back and took a good long look at everything. I realized attitude is part of the problem, but not all of it. I started to journal and then blog and interact more with people online who are going through the same thing. I began to realize if I started being more positive about things in my life and learn to accept the fact there is no cure for Migraine Disease and let go of my anger, hate and resentment over it, and just learn to accept it and that all I can do is find ways of managing it better. If I would meditate more during the painful cycles it would distract my mind from the intense pain and I would not feel it as much as I would if I was tuned into that only and all the negativity surrounding it. Yes, Migraine Disease sucks. It’s horrible. It’s terrible. It’s a curse I would not put on another person. The side effects from the countless medications suck. The cost of the medications suck. Going to the doctor all the times sucks. But you know what, if you just learn to go with the flow and accept it you can go with the flow a little easier and be a better person to be around. So I focus on that-being a better person and going with the flow because I cannot change what I cannot change. If that sentence makes sense to you. Why vent and rant and get all tied up in a knot over something you cannot change or cure? At the end of 2012 I was diagnosed with FM and CFS. I was a little deflated at first and almost got into that mind-set again of “oh great, another curse”. But with the support of a network I set up of people who provide positive influence and positive feedback I got back on track again.

Now I’m in NO WAY preaching to people that you need to be more positive to “cure” Migraines. Heck no!!! I know there is no cure for one thing, and what works for me may not work for everyone else! I know that. I get that. I am only blogging about what works for ME and I am in NO WAY telling everyone out there that suffers with ICI MUST follow my thought process and my routine. NO. You can disagree with how I handle migraines or my thought process to make it through a bad cycle all you want to. It will not change the new way I’ve come to handle them. I found that for ME being positive and focusing on what I can do instead of what I can’t do is a big help. And I did use my positive reinforcements this past weekend when I had a horrible 3-day Migraine attack when I had to use my Imitrex Injections. I tapped into my friend “hotline” I call it for a moral boost and it helped. It didn’t take away my pain, but it helped me to battle through it with no anger, bitterness, resentment, malice or being mean. I stayed positive which is a day to day, hour by hour process. I have to be constantly conscious of it and work on it for it to work for me. And I state “work for me”, not a “work for everyone else”. I do not profess to be a doctor and have the answers for everyone but I can go by my own experience and what works for me. Period.

So if someone writes a post about how they found a way that works for them and that they found happiness in the middle the deep dark abyss, I am happy for them. I will not resort to being angry, bitter, resentful nor criticize them or curse them. If someone finds some kind of relief from this horrible pain I say “all the more power to you” and that will be it. And if I see a post that I don’t agree on I just pass it by and I don’t let it phase me because you know what? It’s not worth the extra energy your putting into bashing that person when you could be putting the energy into yourself. Now if I do come across a site that states “guaranteed cure” I will speak up because I know enough that a statement like that is a bunch of bunk! BS if you prefer. So I’m happy someone could find a way to be happy in spite of suffering from a horrible disease like Migraine. Yes, I know it’s a neurological disorder that has genetic factors to it. I had 2 parents that suffered from it years ago when there were no medications for Migraines. My sister suffers from it and has told of many terrible, horrific ER stories. Which in fact I’d rather roll around in my bathroom floor in extreme pain like this last weekend-a pain level 8-9 and deal with it on my own than go to an ER, thank you very much!

I feel sorry for those who are bitter and angry over someone that has found a way out. Someone who can be happy in spite of it all. I don’t envy the contempt this person is facing and which I might face as well after this post. But life goes on and you get out of it what you put into it. And for me I will put in positive attitude and deal with this my own way. I do not force anyone to read my blogs or agree with what I’m saying. But we can agree to disagree in an agreeable fashion. There is no need to curse or be vile over it. That is an attitude I cannot accept.That is nothing short of Cyber-Bullying. Have we stooped that low?

For that I will sign off wishing you all better health, peace, harmony and good will. Try to have as pain free a day as possible and I wish I could make it all go away for everyone, but that is not in my power. Instead sending you all good wishes to be Happy, Healthy and Be Well.

Julie



DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

My tricks for dealing with unexpected changes in day to day life due to Migraines

First and foremost I make sure I stay hydrated each and every day by drinking a lot of water during and cut back on caffeine. Dehydration is a #1 cause of most migraines and if your dehydrated I found out personally it can take longer for your medication to kick in and take effect and compounding the situation. Other than that I have found the following my best way of trying to cope in a day to day basis that is so unpredictable:
 

 

I have a few tools that I use to keep ahead of the weather, as some of my migraines are weather related due to changes in the barometric pressure. On my iPod I have three go-to tools: Migraine Mate which will let me know if my risks for that day are elevated based on weather patterns due to my GPS location-I can add my pain rating and it will keep a Migraine Log that tracks your Pain vs. Temperature; Barometer which will give me the constantly changing pressure, temp and wind speed based also on my GPS location; and ecoHeadache paid version so I can customize with all my medications and alternative therapies-this is my migraine log and I can print a report to take to my doctor based on my documentations and settings. I downloaded those apps from Apple online store and they are very helpful in helping me keep track of migraines and triggers. On my cell phone I have a paid app through Google Play Store called My Pill Reminder: I have all my meds listed with the doses and times and it will sound an alarm that will not stop until I shut it off so that I do not forget to take my preventive meds on time. Missing doses or forgetting the times and not being on schedule is another big trigger for a Migraine to take root. You must take your meds on time and the same time every day and if you take the same med twice you enter it in twice and have the times set. The night before I have a pill box where I put my doses for the next day so I can have them ready when my timer goes off, that way there is no confusion and no forgotten pills.

 

With those techno tools I can try to keep ahead of any of those migraines that are weather created by taking my abortive at the 1^st sign of an attack to hopefully prevent a devastating migraine. Along with watching the weather updates on TV there isn’t much more I think I can do in that department.

 
 

And then I make sure that my Migraine Survivalist Kit on by beside nightstand is replenished often-after each and every use. I will do an inventory and pre-fill any anticipated RX’s in advance regardless if I need them at that moment or not. It’s best to have them on hand so that I do not run the risk of running out in the middle of an attack, which would be a nightmare and unimaginable.  I also ordered a couple of those old fashioned ice caps, the kind my mother use to have years and years ago. The bag you fill with ice cubes and it has a screw on cap and the outside of the bag is cloth covered so you don’t have to use a hand towel with it. I found these last longer than the gel filled and cost around $6.00 to $10.00 depending on where you buy them. I got mine on Amazon for about $7.00 each. Any freezer gel packs I have I will often check to make sure they have not developed a leak. After repeated use of thawing and being refrozen the plastic weakens over time and I have had some of the gel ooze out and get on my dark navy sheets. Plus with a dog around I’m sure it’s toxic and I won’t have to worry about my dog getting into it 1^st If I don’t catch it in time.
 

 

If I try to make any plans with friend or family I always leave an opening in advance. I will tell them I’d love to have them over or go with them, but I forewarn them that if I get a Migraine that will prevent me from participating to not get upset and be prepared if I have to call or tell them I cannot make it the day of so that they are not caught unprepared. I know no one likes to be cancelled on last minute, but my family and remaining friends have known me long enough and know what I go through and they have learned to expect a possible last minute no-show. Family might get a little upset but friends are more understanding. So on that point I try to maintain and keep open lines of communication with everyone I relate to on a day to day basis and keep them informed of medication and therapy changes as that can play a role as well. Communication is key.

 

When I actually do get to make it out of the house, I have learned to carry a couple of pairs of ear plugs in case I end up in an environment that is too loud since I’m really sensitive to loud noise. I have also learned to carry with me at all times, regardless of the weather, my sunglasses because I can even use them indoors under that terrible florescent lighting. I might get some odd looks if I use them but it’s to my advantage and not those passer-bys. I always make sure I have back-up medications with me as well and even have a pair of my Sumatriptan injections w/alcohol swabs just in case. In my cosmetic bag that’s been changed to my medication bag I also carry a printout of my current medications, OTC supplements, current doctor information and contact information-just in case an accident should happen it’s in print so that there is no lack of communication or confusion when the occasion occurs. In an emergency who can remember the names of the meds, doses and all their OTC items-or those of their doctors contact info or who to contact in case of an emergency? I sure couldn’t. I also carry a mini tablet and a couple of pens to document when I take meds away from home along w/a few short notes so that I don’t lose track of that information. And I will have my mints as well that will soothe my stomach and a pair of Sea Bands for the nausea if it should hit me all of a sudden. And I do a last minute check before I go anywhere that I have my driver’s license and insurance cards and a method of payment in case I end up in the ER to pay the co-pay, so my checkbook or debit card is always with me as well. I’ll have some portable wet wipes with me as well, just in case……….

 

I make sure my cell phone is always on a full charge and I have my contacts phone number information updated. I have my most important ones set on speed dial and I love the feature where I can put my important contacts as a direct dial app on my home screen, so then I just click on their picture and it will automatically dial them up. That would be a great life saver when you can’t think of a name off hand-you turn on your phone and your screen lights up, you see a picture of a face and you select that picture and it direct dials. Because oftentimes when a migraine strikes confusion sets in and you cannot think too clearly, so this is a good tool I like to use even at home. Technology is so amazing this day and age we need to take advantage of every tool as well as the tricks learned on these amazing devices to our advantage. And I make sure in my phone settings I have my GPS turned on so that it’s track able.

 

If I leave the house I will always let someone, spouse, daughter, and friend-know where I’m going and what route if possible. And I’m learning that I need to take the GPS with me so that in case if I get confused if a migraine hits and I cannot find an alternate way home, that I will not get lost and if I have to call someone for help the GPS will show where I’m at. In the past when I’d get lost on my way home I’d call and I’d be embarrassed to say I didn’t know where I was for sure. That is just not a safe place to be-it’s terrifying and could be life threatening if something else should happen like if you get too dizzy to drive or your vision gets too obstructed w/an aura. When you’re out on your own a GPS device and a cell phone are a must have. And if you think you may be gone longer that a couple of hours take along a cell phone battery charger that plugs into the cigarette lighter. And make sure someone checks out in advance the cigarette lighter actually works so that you know you can use it if your battery runs down. You don’t want to be stuck out away from home with a dead battery. And I make sure I have a bottle of water to stay hydrated and of course in case I need to take pills.  And I try to concentrate on staying focused, calm and not to panic.

 

If I get a migraine at home and need the quiet and silence I will put a sign on my front door that will state a Migraine is in process and please do not disturb. Many people have been very courteous and have not knocked or rung that God awful doorbell when I put that sign out. So that is a good way to deter unexpected would-be guests or solicitors when you’re in a not so hostess friendly mode. And if I’m home I retreat to my bedroom that I have made a dark and quite fortress, I will shut off the ringer to the phone, turn on the fan for white noise and use my iPod with meditation music and have turned down low, and I now have an aromatherapy humidifier on my side of the headboard w/soothing essential oils to calm and soothe me.

 My Comforting Blend Recipe:

 

5 drops Lavender Essential Oil
5 drops Ylang Ylang Essential Oil
4 drops Clary Sage Essential Oil
4 drops Tangerine Essential Oil
2 drops Vetiver Essential Oil
2 drops Frankincense Essential Oil
1 drop Marjoram Essential Oil
1 drop Sandalwood Essential Oil
1 drop Myrrh Essential Oil

I combine these oils in a European dropper bottle and keep in a dark, dry cool place-my bedside stand drawer. I will add 8-10 drops in my diffuser because it can take that amount. Some diffusers take less and some might take more. But I found that the pure unadulterated essential oils do not irritate nor do they trigger a migraine. Only the commercialized, manufactured scented items will trigger me. This will not abort my migraine but it will soothe, comfort and relax me so that I can better endure and ride it out.
 

 

All the essential oils I use are pure therapeutic oils. They are not pre-blended nor are they perfumed oils-those would trigger a migraine, so stay away from perfumed oils.
 

(I will carry a small vial of pure essential Peppermint oil as well to sniff if needed when a migraine starts to flare up)

 

And I avoid my triggers: food, beverage and atmosphere like the plague. I eat freshly prepared food and stick to the NHF Low Tyramine diet guidelines where 1 restriction is to not eat anything that is more than 6-8 hours old-so no leftovers. Protein the longer it sits the more Tyramine builds up and is a major migraine trigger. And of course I avoid my other triggers: MSG, Nitrates, Nitrites, Diary, red wine, aged cheese.....

 

I hope some of these tricks and tips will help out someone. If you have a few of your own to share or add to this list please let me know. I’m always on the lookout for new tools and tricks to use for my own intervention.

 

  

May 2013 Headache Disorders & Migraine Blog Carnival: Theme-Practical tips & tricks for coping with the changes brought about in our lives by Migraine & Headache Disorders.  Posted 4-8-13 1 drop Yarrow Essential Oil

Unexpected Lessons Learned and Old Ones Renewed

Who would think that suffering with a chronic disabling Migraine Disease, and other invisible Illnesses, that during the course of time you could find any good to come out of all the pain and suffering. Let alone to find any blessings in any of the chaos-with all the conflicting diagnosis, tests, trips to doctors offices, being yanked from one specialist to another, and trying all different concoctions of medications as well as a slew of alternative and holistic approaches, to try to find some sort of relief of any sort! Some people would not blame you if you just walled yourself up, shut yourself off from the outside world and wallowed in  your own pity, crying day after day “why me”. Some people actually do that for a while until they wise up and too fortunately others still stay stuck in that self-pity mode. If you stay in pity mode for too long you end up living a life on your own. My Blessings are my Lessons learned because as you go through life  and your given a task or a lesson, you work on it, trouble shoot it and overcome it,  and then apply it positively to your day-to-day life I consider that a Blessing-to take a negative and make it a positive to live by, follow and hopefully inspire others.

Human nature is self-preservation. It’s in our genetic makeup and being human and all we cannot overlook that flaw we all have built into us. We can however change our perspective and relearn a new thought process and coping mechanisms if and when we get out of the initial grief process given a diagnosis of a disease that has no cure. Of course the process is far, far worse for those with a terminal illness. But pain is pain no matter which way you slice it and to live in it and with it day in and day out not only wears out the body but the mind and soul as well. NOT to minimize those with terminal illness, I would never do that. BUT you do have a way out by learning to put others first and not focusing on your own pain so much but by putting empathies’ on others above yourself. In the process this makes your suffering seem less catastrophic and gives you a better mind-set makes for a more peaceful transition into a balancing act of normalcy, or what we can come close to in the Invisible Illness Community. You take the hand you’re dealt with and make the best of it. Oh sure you can moan and groan and have a little pity party and bombard friends and family with daily or weekly emails of how sick you are and how hard it is to manage. And it could be very well true as we all know. But after a while those people that you moan to and complain to after awhile will turn a deaf ear to it all and become desensitized by your plight and minimalizing your illness and you as well. And that as a result will diminish the plight of all chronic pain sufferers everywhere in the long run.

I have seen over the years waiting in the doctors or specialists waiting rooms people worse off than I am on an outward appearance and I feel empathy towards them. I’d go out of my way to open doors for them when entering or exiting the building,  or letting them get ahead of me in line-no matter where I am: at the store, the pharmacy or at the check in desk at the clinics. And then I would get to wondering about the people that didn’t show any outward sign of distress (as it can be easy to hide sometimes in public, based on the severity of pain that is) and I would silently wonder what demon (s) they are dealing with and I’d feel empathy for them. Not many “well” people wait for an hour in the neurologist waiting room for the heck of it if they feel well, let’s put it that way. And I’d marvel at how composed some people were that they’d keep their pain hidden from the public. Other times some people would persistently go up to the desk and demand to be seen sooner than the others that came in ahead of them. I would not know their situation fully so I would not sit and judge unless on a few occasions they carried on because they had an audience. But again you cannot judge that person’s circumstances like they cannot judge yours. I’m sure if I allowed myself to be taken to the hospital with a full-on horrible migraine I would not be a pretty picture, so one could only imagine.

I do admit at first I was in the denial, weepy, self-centered “why me” phase for a while and I moaned and groaned and went on about the injustice of it all. Then you look and see newborn babies born premature or with devastating birth defects then you start to feel foolish. Then you see people have strokes, get cancer and die of Diabetes and you feel more foolish. Pain is pain and sickness is sickness. It does not discriminate-we are all destined to be grasped by its devastating effects. I have learned this humbling experience along the way and slowly I learned to put others first and to pray for others first. Because in the end we are all in the same boat one way or another-suffering and trying to cope. And when I’m struck down with another debilitating migraine and as I do my meditation in my dark room with my  Migraine toolkit and fight it out,  I take a moment to remind myself that there are others out there less fortunate that I am and who have it worse.

I have learned that there are people who cannot afford the medical care and medications I receive and that is unjust.  I feel blessed that I do get good care and pray that others can have access to even better health care. I will always try to think the best and wish for the best of others as I fight through my attacks. I learned I am blessed to be provided for as I look at people in line at the grocery store, and especially the senior citizens. I see them digging in their purse or billfold to pay for their groceries and I wonder what hard time they are having and say a silent prayer for them. Or if I see a handicapped person I give them the immediate right of way or help them reach for something on the shelves if they appear to have trouble. Any kind of helping hand is better than none at all. I often wonder if they sacrifice food for meds or visa versa and what a terrible predicament that is. Then I’m humbled and shame myself not to complain. Then I will be at the deli counter and someone has waited longer that me, so I let them go ahead of me. Also if someone is in front of me in the checkout line and lacking some change for their purchase I will offer it if I have it not judging, but with empathy that they are having a hard time making ends meet-do they have to spend their life
savings on food and/or medicines I often wonder. I do not judge but I have empathy and I realize that after all these years that yes, I suffer horrible pain, but I will recover and continue on. I have shelter, food, medicine, family and good medical care so for that I have learned my pity party is No More. And I interact with people online that are more ill or as ill as myself, and I put the focus on them-not me. I will share my experiences if it feels right and maybe that is why I have this Chronic Invisible Illness-to help others with my experience and insight.

We don’t know the master plan of why this and that happens, and we are not supposed to know why, but we can do our best to conquer, survive and thrive. I have also come to realize that yes indeed there  are others that have it worse than me and how dare I whine and complain about what may be trivial as compared to someone who may be terminally ill or have a more chronic condition that I do. It is not a contest of who is the sickest and it’s appalling when you see that play out in life, the “I’m sicker than you are because of this or that” or make a competition out of it. Come on, grow up people and see the bigger picture. It would do no good in the end and would only end up adding to my suffering and make me or someone else lonely, bitter, and resentful ole hag. And who the heck wants to be around that? NOT me! Attitude is half the battle and if you win that you’re on the home stretch. Life is what you make of it, as it’s been often quoted but so very, very true. And your attitude impacts your health-mind over matter. It’s been proven and from what I’ve tried to practice I’ve found it to be true. I’m human and I slip up from time to time, but then I will catch myself and put it all back on track. It’s a constant learning experience. I’ve learned doing a daily gratitude journal is a great way to reinforce this mindset, and to practice writing daily what I have to be grateful for. It’s all about keeping things in perspective. And also by doing daily Bible Devotions as well and incorporating them into my journaling and remembering while meditating through the pain or even on tolerable days-it doesn’t matter what the circumstance remember what I have to be grateful for and how fortunate God gave me the gift of another day so I make the best of it as best as I can.

I have learned to be a better patient as well. To research online before my appointments and take any documentation with  me and especially make sure my information sheet I make up and take with me is  better organized and updated with current medications, supplements and symptoms I’m having trouble with. I learned a valuable lesson from a pier online how to make a better patient form and my last visit I took my draft and the doctor was very appreciative. They see so many patients in a day that they don’t have the time to go through the electronic files and remember everything about each patient. I keep mine to two pages max as not to overload him/her and I update it as soon as my medications are updated and/or changed so that I don’t have to do it last minute before my next appointment. I have come to be more organized in  some areas but a work in progress in other areas.

**These are by far the best lessons I have learned-to be unselfish, compassionate, , patient, calm, focused, forgiving, dedicated, spiritual, humble and self sacrificing. I have finally learned to stop fretting and worrying about tomorrow or the future-it’s out of my hands to an extent as God has the master plan. So I take each day as a present and consider tomorrow a gift.  I have learned to love unconditionally even if it is  not returned, to let go of past grudges-let it go and don’t fester on it-it only hurts you not the person your grudging. And to live each day like it’s my last. To not hold material possessions as more important than family, friends and life-you can’t take it with you and it’s only temporary while we walk this earth. We didn’t grow up with much and mom and dad always told us you came into this world without a penny and you will leave without it, so don’t put value on meaningless material things-God first, family second and friends. It helps too that my parents raised me this way-to do unto others as you’d have them do unto you. We were constantly told that as we grew up. It was actually hammered into us as well as to respect your elders and to always say please and thank you, and to always be humble. And it’s not worth it to fight-who cares who’s right or wrong. Usually the person you’re arguing with will not change their outlook or perspectives, so why waste your breath and time. But to stand up for friends and family and lend a helping hand to others
in need when possible.  It hammers home the practice of turning the other cheek, which for people as a rule we are prideful and do not want to turn the other cheek and let any insult or wrong-doing pass. No, we want an eye for an eye and a tooth for a tooth.  We want punishment-we want revenge. It eats us alive over time because we let it, and that negativity also feeds to chronic pain. We are not in general forgiving people. I have worked hard to overcome that thought process and have forgiven a past horrendous act against me physically and emotionally. My attacker did not ask for forgiveness, but I gave it after years of repressing it then seeking help and dealing with it to get my PTSD in control.  I do feel freer to have done this and talking about it helps-that in and of itself if anyone takes away anything from this post it should be that-FORGIVE any past grievances, work on it with a counselor if needed like I did, talk to friends and pray, pray, pray on it. With work you can let it go and that too improves your outlook on dealing with chronic pain. There is truth in mind over matter. Practice and believe it because it’s true. Again, it will not cure you but makes the whole situation more tolerable. It’s ok to have bad days and slip, but recognize it, correct it, and get back in line.

I have also learned over time and research there is NO cure for this disease and have come to grips with it. I have made peace with it and even when I have sometimes well-meaning family and friends say I need to work harder and go places to be "cured", it's fruitless to try to re-educate them that this is cureless, I let it now go over my  head and pass by me like the breeze and not upset me anymore. I have learned, the hard way, that they will never get it even seeing reports in print and online so why fret over it and stress over it. I'm at peace with it and let it pass me on by. That is a Blessing that I can come to terms with the disease and almost make friends with it by letting it be my teacher.

Well, mom and dad, it finally stuck and yes I did learn something after all. As they are watching down from heaven I can only hope I’ve done justice to their lessons taught. You cannot take Southern manners out of a Southerner, even when I’ve been transplanted to a Northern location :)

Sometimes Chronic Illness can be a blessing in disguise with all the lessons you learn along the way. Especially for me as these are my experiences and what I have learned and can attest to. You can learn how to be a better person and leave a positive footprint in the lives of others. I think that being so ill and struggling with chronic and most times excruciating pain daily, and focusing on being positive, peaceful and calm-meditating and praying through it with my calming mediation music, my darkened sanctuary, essential oils and my best puppy friend. That along with my parents teaching has made me a better person. At least I like to think so.


Migraine Carnival April 2013 Theme: Unexpected Blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.
(Submission 3-27-13)
 



Migraine Carnival Blog Postings for April 2013

Migraine must have survivalist kit

Step Bench is for my Dog to get onto bed

1. Dark Bedroom (shades closed, curtains closed, door shut, and cell phone shut off-sanctuary in place

 

2. Several Ice packs (different shapes for different applications all frozen and ready to go)

3. Cool washcloth to wipe off face or place on forehead

4. Bed Buddy (1 for neck and shoulders and 1 pr for feet for microwave, and a few homemade rice packs)

5. Warm fuzzy socks

6. Warm, loose fitting, comfortable fleece pajamas (or men’s over sized fleece separates-the baggier the better)

7.*1-2 bottles of water for bedside table (I can tolerate water at room temperature better and keep nearby at all times)
 

8.*7-up at room temperature (room temperature settles better if I need to take w/saltines so I keep one nearby at all times)

9. Ziploc bag w/straws for 7-up

10.*Abortive Medication on bedside table (Imitrex injector pen kit w/refill, alcohol swabs, Migranal  Nasal Spray w/portable O2 tank nearby)

11. *AYR nasal gel packaged in small Ziploc bag w/Q-Tips for use w/O2 to keep nasal passages moist

12.*Backup Medication on bedside table (Indocin and Fioricet-experimenting w/herbal Hylands Homeopathic Migraine Headache Relief Tablets)

13. *Anti-Nausea Meds (Zofran)

14. *Sea Bands for nausea

15. *Organic all-natural peppermints

16. *A pkg of saltines (in 2 large Ziploc bags (to keep from going stale faster)

17. Notepad on bedside table to document medication w/ 2 pens and 1 pencil

18. Post-it notes for spur of the moment thoughts or to-do’s

19. **Box of Kleenex

20. **IPod loaded with soothing meditation music w/comfortable aftermarket ear buds

21. **Over sized eye mask to block out light

22. **Package of ear plugs to use when IPod not in use

23. Electric Fleece Throw (under comforter on top of blankets and sheets)

24. Extra pillows

25. *Essential Lemon Oil (for use on temples only-massage in and on tender points on scalp)

26. *Small package of hand wipes

27. Small bedside lamp w/dimmer setting or switch

28. Small flashlight to use in middle of night to get medications and document on notepad as to not turn on any lights

29. Picture on bedside table-family members, friends, or scenic to comfort and focus or meditate on (I change randomly depending on mood)

30. A lined waste can (Just in case)

31. Nightlight in bathroom so you do NOT have to turn any overhead or bathroom lights on

32. Cell-phone w/ringer off (we have no land line)

33. Timex watch w/Indi-glow face (emits a soft glow to tell time to write down medication doses so no need for lamp or blaring screen on cell-phone)

34. My glasses (of which without them I am totally blind as a bat when it comes to reading)

35. *Un-scented lip balm for dry lips (seem to get extra dry during a migraine attack and if using O2 w/Migranal)

37. Heavenly Acupressure MAT & PILLOW Combo (got this off of Amazon as well. I use it on the bed as the floor is too uncomfortable)

38. I try to make sure that I remember to post my re-usable laminated "Do Not Disturb" sign on my front door so that no-one rings the doorbell and sets the dogs howling and barking!

39. My bible and Journal if I feel up to trying to read a scripture bookmarked for inspiration and my Journal to write down something positive for gratitude to focus on positives and not negatives

40.  And last but not least, my most important Migraine Med-my little cuddly dog Paco who snuggles and keeps a watchful eye over me when I’m ill.

*(I keep most small items in a small basket on my bedside table in an organized layout and what doesn’t fit **I have on my little cove on the headboard, all easily accessible. The only things I need to get up and get is the ice packs in the kitchen and re-heat my heat pads in the microwave)

 When I first started getting Migraines over 25 years ago the house we had then had a window in it so when we built the house we live in now we customized it and I made it Migraine friendly, which meant NO windows in the bathrooms. A lot of people thought that was strange but I spent a LOT of time on the bathroom floor in the early stages of my Migraine episodes (and still do from time to time) near the toilet, or porcelain throne if you’d prefer to call it that. And also the feel of the cool floor against my head was comforting in a strange way as I made a pallet to lie on as comfort was not the main focus at that time. Little was known about Migraine disease and there were no medicines at that time targeted to abort nor prevent them so it was just riding the storm out the hard way. Earlier in those times my dad brought me over my mom’s Darvocet as that was all she had been given to fight her migraines. Now I know that is a big no-no sharing ones medications but there was nothing for me to take that would take the edge off.

Thank God they were not that frequent but after a few years Imitrex came out and I went to see my family MD. I was officially diagnosed with Migraines and when I got my RX filled I about had a heart attack as this was a new medication, not yet covered and had to pay full price for 9 pills and it was an ungodly amount of money-almost $200.00 at that time! But by then I learned to add to my arsenal Ice packs for my head and neck as they seemed to favor one side of my head it was a challenge to keep the ice pack in one place. So I moved to the bedroom and tried to make that a refuge. When we designed the house I made sure that the only bedroom window was facing North, so no direct sunlight would come through and that side is mostly in the shade, but any light is agonizing. The bedroom was still too light so I got room darkening curtains and tried to make due. Then I got soft over sized eye mask and that seemed to work. I used an ace bandage to try to keep the over sized ice pack in place, but that was a hassle when it was time to swap out ice packs when the one I was using melted and I needed a fresh one.  Plus sometimes I got it either too tight or too loose.  I cleared all nick knacks off my side table to keep meds handy and a glass of water. Then later on to keep a notebook to keep track of when I took my meds and what the pain level was-I started keeping a pain diary of sorts,  and also a small lamp that was adjustable in brightness in 3 clicks-from low on the 1st click to too bright on the 3rd click. I know have a handy organizer tray on my bedside table to keep almost everything I need in one spot.

 

Then I painted the bedroom a soothing dark blue, the curtains a dark blue and I installed room darkening shades to cover the windows, and I call it my little cave-my sanctuary. I have a dark blue comforter bed set and when the bedroom door is shut and the shades and curtains closed it’s nice and dark.  At first I liked the room cooler and had a small fan on the floor for white noise. I searched online and found ice packs that would form to the head but it was a narrow one, but I got it anyway figuring it was better than nothing. Then later on I connected with a fellow migraine sufferer and she sent me a skull freezer cap! Kathy has been amazing and I will not share her full name but that we met when she posted on Migraine.com which I have followed for a few years. I don’t know what I would have done without Migraine.com! If it were not for a post by Dr. Marcus on Fibromyalgia I would not have known I had a lot of the symptoms-in which I was just recently tested and diagnosed w/FM and CFS.

 Then I started getting a lot of neck and shoulder pain and found that heat worked better than ice so I had gotten one of those bed buddies that you warm up in the microwave. I also made some of my own out of men’s white tube socks and raw long grain white rice to use on other body parts that hurt and felt raw-back, hip, knee, shoulder, and elbow and in the interim on my neck when I was waiting for the bed buddy to heat up. My daughter got me Bed Buddies Heat warmers for the feet. Wow, do those feel great. And I am once again a big fan of over sized loose fitting fleece pajamas. I don’t care what the size label says anymore-the bigger and looser the better. Anything that is constricting adds to the discomfort. Even in the summer I am too sensitive to the temperature and now I found out why. I also have Fibromyalgia and Chronic Fatigue Syndrome. That would explain the muscle spasms, sensitivity to temperatures, chronic fatigue and maybe the daily chronic Migraines. But that is a different story for a different time. I cannot do aromatherapy but I found that lemon oil was suppose to be good for migraines after researching online so I got some and apply it only to my temples and tender spots on my scalp and neck. It warms up and does something-I cannot explain it, but it smells fresh and doesn’t overpower and I can tolerate it. I cannot tolerate lavender oil as it is too overwhelming and for those that are the same way try lemon oil. I have read that eucalyptus and rosemary essential oils are good for sore aching muscles so I might try those at some point down the road.

 I turn on the fan and point it away from me now, but the white noise helps drown out any noise that goes on the other side of the door and through the house. I will pop in my ear buds and turn the volume on low and play soothing meditation music and focus on an object in the room-picture on table or wall or maybe a statue and meditate. Sometimes a 7up will help the stomach instead of water and saltines. When it gets bad eating solid food is out of the question and I know they say not to skip meals but come on! When you’re so sick you cannot keep anything down the last thing on your mind is food. So I try to Zen out, chill out and replenish my ice packs as needed and reheat the hot pads also. If I’m home alone that means I am disrupted a lot. If I’m not then I can ask for help when others are in a fair mood. I try really hard to focus on the positive and when others around me are negative I still try to maintain a positive attitude and if I find it hard to do I focus on trying to block it out because negativity makes the pain worse. I found that out by concentrating on it and focusing on it and realizing that it was true. Being positive does not take away all the pain but it makes the burden easier to bear and being negative or around negative people not only brings you down it magnifies the pain. So meditation and chanting a mantra on staying positive helps and working really hard on keeping that up, and I cuddle with my little dog Paco who turns into a little nurse aide and he keeps a watchful eye on me when I’m ill. He will not leave my side and is extra cuddly and affectionate and gives me the unconditional love that I need the most to help me endure and pull through yet another bad spell.

If my migraine lets up some to where I can semi-function I will get out my laptop or tablet and connect online to get a pep-talk of sorts. But that is only when I’m up to it because sometimes, well most of the time, when I get online I don’t know how to cut it short. I start seeing topics or conversations and I get carried away. Or I think of something I want to search about and before you know it I have a lot of pages bookmarked that I have to check out later when I’m functioning better. I try really hard to keep technology out of the bedroom as it’s suppose to be a sanctuary, but once in a while I break my rule. That is something I’m working on really hard. I have to admit last week I did really well and I did not take them into the room with me, so I’m making some progress there. But this is how I survive my Migraine episodes. Some of these I picked up on my own by trial and error, some from blogging with others on Migraine.com and from other bloggers.

 I hope I have something in my “Kit” and “survival tactic operations” that might help someone else. This is how I stack and prepare my safe zone as I call it-to feel like my sanctuary to ride out the storms and have most of what I need at fingertip reach. Looking into a very small freezer for bedside, but not very practical at this point, but my ice packs would be a lot closer-not that it kills me to go to kitchen except if the lights are too bright. We have a skylight in the kitchen ceiling-that was a bad idea-and a lot of sun comes through it.

 

Until next time remain steadfast in prayer, be happy, healthy and stay MIGRAINE FREE!
Julie

 

 

 

 

What people say about Migraine Disease that irk me and rile me up

What people say about Migraine Disease that irk me and rile me up
WARNING, contains dark humor, gross factors, Sarcasm and counter attacks

 

Those of us that struggle with this Invisible Chronic Illness called Migraine Disease have heard it all and thensome. Not once or twice but over and over again like a warped record that you’d like to take and bash against the wall into a million pieces so you don’t have to hear it anymore! You’ve tried to explain it over and over again to loved  ones, family and friends. But they don’t listen or they don’t care to or they just don’t get it. Some days you’re just so frustrated it makes you want to scream! But other days your just so battle worn and weary that not only is your body weary and worn out so too is your mind, and you just mentally say to yourself “whatever” and curl up in a fetus position and want to be left alone in silence. We have to just face it-until they experience one themselves they will never understand nor appreciate the pain and the whole body experience one goes through when an attack happens. I have had to unfortunately learn to function at a pain level 6 and will not medicate until I reach a level 7. I’m in quite a bit of pain at 6 and make myself put on a brave face and its taken years to get to this point, its taken meditation and prayer, but I can semi-function but I cannot be overloaded or overstressed.

I have in the past, replied to a few but not all comments (depending on who it is-if it's family it’s gloves off) with some sarcastic dark humor and off the cuff comments because they don’t listen to me any other way so I figure what the heck. Knock them off guard and counter attack is the best method-deflection has saved me a few times. Once in a blue moon it has not. But it’s been my ally a time or two because it’s made the other person really stop and think and I do believe it’s made an occasional person stop to think how idiotic they are. Well, maybe once.

My pet peeves based on my personal experience:

My biggest one (and everyone’s) you don’t look that sick to which you’d give a tart reply of “oh well hold on a few seconds maybe if I hurl on your shoes maybe that will convince you then”

One that gets me riled is can’t you take an Excedrin for that and get on with it, to which I have replied from time to time “well I tried M&M’s too because they are just as effective-close but no cigar so I had to give them both up and go to the doctor for real help. Mars was not happy but they got over it since they got more customers to take my place and Excedrin didn’t miss me one bit”

I still hear from extended family and friends about a “cure” they hear about or that I should go to Mayo. Again I have learned, slowly, to stay calm and explain “There is NO cure for migraine disease-it is a neurological genetic disease that they can TRY to control with hand me down medications and Triptans to abort migraines from becoming full blown migraine attacks, but again there is NO cure. I hear this is a cure for idiocy, but alas that has failed time and time again (heavy sigh)”

Then the ones that like to judge just how sick you are by the look in your eyes by a number of how sick you really are to which you say “I just medicated earlier so you can’t judge that way” Or I have replied to a couple of people “I figured I better put on my best face so I could give the undertaker a vacation” Or better yet “If I really looked how I felt I’d scare the crap out of you or else I’d be a convincing extra in that new zombie flick that’s out now in the movie theatre”

But how about the ones that say If you get out of bed and get outside and do some yard work or mow the yard you’ll feel much better than lying in bed with an ice pack and the curtains closed to block the sun, to which you reply “Leave me now-I’m practicing to be a vampire for True Blood and your ruining my practice for daylight down-time you irritating mere mortal.”

Or how about what another Migraine AGAIN didn’t you just have one, to which you’d reply “Well, I’m sorry if my schedule and yours isn’t lining up. I’ll talk to my head when it lets me regain control and see when we can pencil you in for a tentative spot, subject to change since I have basically no control”

Or you’re in bed with your head packed in ice, heat pad on your neck, room totally dark, everything shut off, you just finished your abortive med with oxygen therapy and you get the comment “what have you done all day, the house needs cleaned” to which you reply “You just missed the toga party and I’m having so much fun here can’t you see”

And an oldie but goodie, are you going to get up and make supper OR what’s for supper I’m hungry, to which I’d reply “I have my bucket here on the side of the bed-would you like me to reheat it for you and add some veggies for a stew?”

Or yet another oldie but goodie, they email me or come to me and say here's an article they read I should see to which I replied "That's from a book I purchased in 2003, so that's old news, it was a good book I read it a few times if you care to borrow it. Thanks all the same I've been researching migraine disease for 25 years and your info is old news so leave the researching to me please I know better what to look for since I've been at it for so long"

And still yet, I get all the time about supplements or meds to try to which I respond "Been there, done that, tried that-cannot use that-it interacts with my current meds but thank you all the same leave the research to me and my doctor-we know what's best for me and what will and will not interact with my current regimen"

They all still rile and irritate me but I have learned to knock them off guard with sarcasm and deflection tactics. Since they won’t listen to reason they respond or change the subject or until they wake up and realize what’s going on, or when they are made to feel like an idiot or the brunt of a joke or that they made a mistake. That gives me a breather sometimes and gets them off my back which is my intention, which lessons the stress which we all know stress is not good for a migraineur especially when you’re in the throes of an attack. If you like any of these feel free to use them or expand on them. Or feel free to share some of yours with me.

Or else just sit back with me sometimes with that dazed and bewildered look as you stare at those repeat offenders and wonder just what is really going on between those ears of theirs, besides a wind tunnel. I mean honestly!

Until next time stay healthy, happy and safe. Best wishes to you and your family.
Sincerely
Julie

The Thanksgiving Kitchen Renovation that almost did me in.

A standing 5 gallon water cooler was leaking underneath through crack in-between tile and subfloor layers between the wall and the base of the water cooler, causing the tile to buckle and come loose between kitchen center isle and sliding door. So the 1st week of November hubby proceeded to take the time to demolish the floor, finding black mold through 2 layers of sub flooring between the ilse and slider so both layers had to be removed down to the floor joist. Heavy work, sawdust everywhere and I had no idea that I would react so bad to black mold. Had breathing problems, watery eyes and my migraines intensified. And my muscle spasms (didn't know at the time I had Fibromyalgia) hurt even worse when I had to help with all the heavy lifting. Thank God Thanksgiving was not at our house this year because it looked like a war zone. Who would have thought a water cooler would cause so much damage.

Floor joists revealed-plants put down so we would not fall through to the basement. As big as a klutz as I am that would not have been hard for me to do. Granite counter top overhang on the island being held up with a beam on two chairs and props Redneck style.

New cement board on top of new 3/4" sub floor. Man oh man that 3/4" sub floor was fricking heavy. Made that cement board feel like nothing. Cement board replaced the 1/2" wood sub flooring we had originally to make it more waterproof and a vapor barrier went between both layers for more moisture protection.

Cement board you have to do like drywall which I did not know. The night before you tape the seams and then use the mortar that you'd use to set the tile on the seams so it cures before you can set the tile the next day. To make it easier and faster and plus the fact we had doggies and an overly curious cat in the house the full pieces were set first and to cure overnight as it was a pain to take the dogs out on a leash around the house into the back fenced in yard to do their duty. They don't cooperate and go potty on a leash. They like to wander in the fenced in area and sniff out the perfect spot and being tethered to a leash just doesn't get it for them. Spoiled dogs. But we love 'em.

Full pieces set. Now to cure overnight and will be ready for "light traffic" only. But come the next day the pieces needing cut will be set into place and after another night of dog walking then the grouting can take place. Grouting is time consuming, messy and a pain. It's all a pain-hard on the back and knee's even with knee pads. Your constantly bent over and pushing tile into place and I was down on my knees handing him tile and spacers as he needed them. A lot of back pain accumulated over ripping up flooring, putting down flooring and laying tile and grouting. Tiling is no fun.

 

The kitchen was actually done before Christmas. I have to find a way to get rid of the date mode on this digital camera. It's actually quite annoying. But after all the back busting work I guess it was worth it. Getting that monster French door fridge in the front door by ourselves was no picnic. Paid for Sears to deliver it. I was home alone and the delivery men said they only had a 12 min time frame to deliver it and they'd have to unpack it and take off the doors and how it was such a monster of a fridge, so they dropped it off and left it. I unpacked it and took out all the shelving and interior components. My husband called Sears and the delivery guys were suppose to come back and bring it into the house. It was not suppose to be installed just delivered into the house. Well, they never came back. So my husband got his dolly and he was at the top end and I got the bottom. It just barely cleared the doorway with the doors left on the fridge. That was a back and leg killer. Weighed a ton I swear. After that getting the old fridge out the next 2 days was a little easier-if felt lighter compared to "the best" I'll call it. But new fridge and new super quite dishwasher. Now if I just had a new body and head.................................................................................................................................................

 

I just had to put this picture in here. My beautiful daughter and her two boys on the LH side and our boy on the RH side in their Christmas sweaters. I hope everyone else had a more enjoyable Thanksgiving, a Merry Christmas and a Happy New Year.

I had to put our little boy Paco in his Christmas sweater. He's taking a break from all the festivities. He enjoys having company as his "Aunt and Uncle" showed up with healthy doggie treats for the little fella's. And of course being that they are all under the age of 3 they are still in that puppy mode and love to romp and wrestle with each other and with their human family as well. It was an overly exciting day for them and they were pooped come bedtime and they recooperated the day after, as did I.

Lets make 2013 a year of new changes for a healthier lifestyle, a healthier outlookon life, being kinder to not only others but kinder to ourselves and taking the time to be our own best friends. But first and foremost being our own patient advocates because If we cannot help ourselves how can we expect others to help us? We cannot. We need to learn to stand up for our rights as individuals and as patients and demand to be treated with respect and dignity. And when we don't get that from our health care team then it's time to fire them and hire a new team. Can I hear the Donald Trump Corus? YOUR FIRED!!! We cannot tolerate and do not deserve to be treated as 2nd class citizens, and if we allow ourselves to be treated that way then we have no one to blame but ourselves for the sloppy care, or sometimes haphazzard care we receive in return. So we need to be assertive and take the bull by the horns if need be.

A New Year, A New Life Change for Better Health-Taking Charge

A New Year, A New Life Change for Better Health-Taking ChargeNew Years resolutions are easily made and easily broken. Usually they last a week or so. But to make a New Life Change for Better Health and to actually get down to the nitty gritty, take control of your health care decisions, be more assertive and pro-active is a life long commitment. And if you have not done it by now what better way to start than by doing it as a fresh start to the NewYear!

I made the 1st step by finally taking care of nagging and persistant on-going pain that was not
totally migraine related and finally getting it checked it. At first it was just a little bothersome and I ignored it. Then it progressively got worse that by late summer early fall I could not ignore it anymore. Thanks in part to the great support from the patient advocates and other members at Migraine.com, I did some research online and started putting the pieces of the puzzle together, adding up 2+2 to figure out that I must have Fibromyalgia. Thanks also to Dr. Marcus for basically reaching through the computer darn near to slap me across the side of the head to say "duh". Or at least she should have!.

My Neurologist/Headache Specialist nor my MD came up with the diagnosis. With my Neuro we concentrated on my migraines which were driving us both batty, so in his defense I really didn't complain about the complex body aches and pains and all that good Fibro junk. I had to make printouts and go to my MD and take charge and say "look, I have all these symptoms, they are not migraine related and I seriously think I have this disease. Can you check this out and confirm it and help me and treat me for it? Well, this was in late November and my MD ran a bunch of blood work she said to rule out various other diseases before  she'd "officially" diagnose me with Fibromyalgia and then she'd treat me for it with Cymbalta. The lab messed up on my blood work twice and I have to go in a 3rd time for yet another blood draw for a SED Rate and Lyme Titer before she will even see me again to diagnose me and treat me! Needless to say I'm searching for another MD.

I saw my Neurologist/Migraine Specialist this week on the 8th. He was flabbergasted at the fact I'm not being treated. He said without a doubt with my symptoms and pain points I have Fibromyalgia no questions. He put me on Cymbalta. He said to go through with the blood work because the SED Rate is important and to have all the results sent to him.

But the point is that you don't sit back and let any doctor treat you with disrespect, or as less than a human with physical needs. Here I am in pain and suffering and I keep being put off. This makes the 2nd time they called to cancel my followup appointment because of botched up lab work that is not my wrong doing, but yet my "official" diagnosis and treatment is on hold and being held hostage because of lab error and a doctor with rigid inflexible standards and will not take a person suffering into account and help them out in the interim.

But my goal other than to find a competant MD is to work with my Neuro to get off of some of these meds. He took me off of the Remeron right away and is weaning me off the Amitriptyline so I will be off  that in a week. The Tizanidine will be taken PRN as the Cymbalta will take the place of those 3 medications. But I'm hoping after I've been on that med for a while I can be taken off the Diazepam.

I will continue to research online and if I find treatments or medications that sound promising that I'd like to try I will print them out and take to my neuro, like I have done in the past, and we will discuss if it's right for me and if this is the right time to try it or if not to put it away for a later date or if he doesn't like it he  will tell me why and we will debate it until one of us gives in or we both come to an agreement. At least with him I can talk to him because he is willing to listen, he's open to my ideas and input as I'm open to his. We have good communication. I just wish I had found him 25 years ago. But I cannot look a gift horse in the mouth. At least I have found him now all thanks to my therapist-she referred me to him and I cannot thank her enough.

And then I have to learn all there is to know about Fibromyalgia now as this is a whole new kettle of fish to me. I have to start very slowly on an exercise regimine to control the pain and the very intense muscle spasms. Night before last I woke up in the middle of the night with the most severe muscle spasm in  the calf muscle. It would not go away. I tried to stretch it and it spread to my hamstring. I laid on the floor to do the hurdler stretch and I was about ready to cry when the bottom of my foot started to cramp. Yipes! I took a Tizanidine, used hot pads, that morning took a few hot Epsom Salt baths. That leg and foot hurt for a good 24 hours. Yes, I need to start a slow and steady exercise program to make sure that does not happen again.

I have always eaten fresh prepared food made from scratch. I cannot eat anything prepackaged or premade due to chemical sensativities. But I do need to cut back on simple carbs and eat more complex  carbs and more fresh veggies and fruits. If fresh veggies are not an option I can go with frozen. I need to stay away from canned to watch the salt intake. I have to limit my meat intake to once a week. I eat a lot of boneless skinless chicken breasts but I have committed to eat more grilled or broiled fish. We got  some Salmon fillets and divided them up in portion sizes and froze them. Finally they had a sale on them. Got some other fish as well but Salmon is my all time favorite. I grill all year round, even when it snows. But I draw the line in a snowstorm so then it's under the broiler in the oven.

I need to meditate more and get more peace and tranquility in my life and try to push away the stressors. If I cannot remove the stressors I need to find better coping mechanisims. I need to see my therapist more often. She has offered to do sessions via Skype for when I cannot drive due to visual aura's or disturbances so I'm going to have to take her up on that. I need to have a steady anchor in my life that I can count on that can counsel me and keep me on steady level footing and help me cope with the insanity. And I also need to keep my depression in check, as well as my anxiety and OCD. Without seeing my therapist on a regular schedule I have seen how I have slipped back into old patterns of self-doubt, anger, resentment and deeper depression. I am sinking into the despair that put me into the hospital last summer and I cannot afford emotionally nor monetarily for that to happen. I do not want to admit defeat or failure or repeat the same cycle of self loafing and self hate. I must get this under control and do it fast because this is not the way I want to live my life.

I need to focus on doing all of the things above and by doing so I hope to get the migraines under control and the Fibro pain under control and then I can get my life back under control so that I can participate  in life and the life of my family and friends. What I would love to be able to go out on the spur of the moment to the stores and go shopping, or go see a movie (taking ear plugs of course and a sweater even in the summer, brrrrrr) or on a road trip on a vacation as a getaway and not worry about getting sick and  ruining everyones fun and my being totally miserable. Having an impromptu cookout and inviting some friends over or family. Or being able to keep up on the housework for a change instead of having the housework bear down on me and seem like a Mt. Everest that I cannot conquer.

This is my New Year, New Life Change Game Plan for Better Health. My Take Charge Initiative is not a New  Years Resolution because on this I cannot falter because these diseases will be with me for the rest of my life. And if I fail on my Game Plan and Life Change I will only become sicker and not better. And only God knows how sick and tired I am of being sick and tired! I want to feel well again! I know I cannot regain good health and be 100%, but if I can get 50% I'll be happy with that! I try to think of the glass 1/2 full. Thinking positive thoughts will bring about positive changes.

Oh, and by the way-Happy New Year.

Stay Happy, Healthy, Peaceful and Safe
Sincerely
Julie

ps
I just got in the mail a survey form for my MD. Hmmmmmm, this should be very interesting how I fill  this out. Got a gut feeling she won't be getting 5 stars from me, ya think? And neither will the affiliated lab for that matter.