Just simply waiting..... and waiting......and waiting......

If we are not all to aware of constant waiting.  Go to the doctors for an appointment and sit in a chair, an uncomfortable one at that, and wait.  Of course way past the time we should because I don't know many doctors that run on time.  We go to the pharmacy to get medicine and hope they are done, after waiting in line to pick them up, is it ready, if not we have to wait.  We call the doctor to tell them the new medicine is not working, the old medicine has stopped working, the pain levels are higher than usual and we wait for the phone call back. We take the pain medicine and wait for it to work, we go to bed and wait for sleep to come and the important of them all we are all just waiting, and of course praying, hoping and dreaming, of a cure.  

My wait today is a combination of many of them.  I had to call the neurologist today, again reporting the attempt at removing from the nortriptylin and not replacing it with anything is yet another failure.  I am no longer constantly feeling as though my head is swimming and every time I stand up I will pass out, but, my migraines and hemicrania continua that has been under much better control, has become horrific again.  I am not sure how  many of you have migraines.  I have suffered from them since I was eight.  Then about 10 years ago I started with a constant headache and nothing that ever helped my migraines took it away.  It took almost 4 years to diagnose because it is a rare condition, but then on top of migraines, they discovered I suffer from hemicrania continua.  This is the definition 

Hemicrania continua is a chronic form of headache marked by continuous pain that varies in severity and always occurs on the same side of the face and head.  Superimposed on the continuous but fluctuating pain are occasional attacks of more severe pain.  The headache may last from minutes to days.  Symptoms fall into two main categories: autonomic, including runny nose, tearing, eye redness, eye discomfort, sweating, and swollen and drooping eyelids; and migraine-like, including nausea, vomiting, and sensitivity to light and sound. Most patients experience attacks of increased pain three to five times per 24-hour cycle. This disorder is more common in women than in men. Physical exertion and alcohol use may increase the severity of headache pain in some patients. The cause of this disorder is unknown.

There is two forms- chronic, with daily headaches or remitting, which means you will have it for 6 months or so it will go into remission and then occur again.  I of course have the chronic one, no break for me, lol.

So now, on top of the normal headaches and migraines, I have this to contend with.  I take a medicine called Indocin, which has made a huge impact on the pain, and helped regulate it.  It states in all the things you read that it is a great drug and usually provides total relief of all symptoms.  Well guess what, I am one of the not so  usual,  is that much of a surprise to anyone out there, ya me either.  I won't say it does not help, it actually holds it at a bearable stage most times, but I think also having other meds involved has helped alot.  Now they have taken me off of Cymbalta, because it is not a drug my isurance covers under it's formulary and I have to try all these older type meds before they will and I can not afford the cost out of pocket and my husband and I make just enough that we don't qualify for any assistance.  I have tried nortriptyline which screwed with my blood sugar, made me constantly dizzy and nauseated, even more than normal, car sick and unable to drive, so that when out the window.  So, now I have to try more in the list of TCA (tricyclic antidepressants) before my insurance will cover the one medicine that was working, the Cymbalta.  So it is just a constant waiting game, waiting for the doctor to call back, waiting to see what med it is this week, waiting to see if it works, and all because someone sitting in an office is better at telling me how I feel then just being willing to pay for a medicine that works.    Well, I guess such is life.  The funny thing is, the Cymbalta helped with my depression, the headaches, the fibro pain, all of it.  I do not have the ability to take narcotic medicines.  I have a crazy reaction to every one I have tried, so pain levels for me are always crazy.  Cymbalta helped with all of that.  They had to keep increasing my dose every 6 to 8 months as I adjusted to it, but that is with every medicine and I had only been on it a little over 16 months when my insurance changed and threw me into this mess.  So I guess I will just wait some more.  I have to thank God some days for being a semi patient person, because If I was not, things would drive me insane.  I will let you know what new and exciting adventure I embark on as soon as I find out.  Until then, have a good night.  

A quick hello!

Hi Everyone, I truly hope you are feeling well enough to spend some time celebrating July 4th weekend with friends and family.  I am doing just that.  Wearing my self out in the process and reaching pain levels I did not know where possible, but hey, it is a holiday and we have friends down I don't get to see often. Plus my oldest son is here and except for a slight melt down tonight, everyone is getting along and having a great time.   You do have to expect some minor altercations when you bring family together. If you have a family that can stay under the same roof, that normally does not, add in a few more extra people and do not have any issues, I desperately would love your secret!!!!  We had an awesome picnic tonight, grilled some hot dogs, hamburgers, and chicken breasts.  Then had home made Amish Macaroni salad, homemade cucumber and onion salad, cole slaw, fresh from the farm tomatoes and corn on the cob.  Lots of conversation and laughter.  How can you beat it.  Well let me tell you how, you celebrate a birthday!!  Last year we were on vacation at this time, in Ocean City, Maryland.  Well it just so happens as of August last year I relocated to Selbyville, Delaware just about 20 minutes away from Ocean City.  Then in February was relocated again to Bethany Beach, De.  I am now living exactly 10 miles from the Apartment building where we stayed on vacation last year.  So this year, most of the people that came on vacation with us, came to stay at my house instead of somewhere else this week.  Even though we won't be here for the exact birth date, we started a tradition and wanted to continue it this year.  So we decided celebrating the birthday was going to be part of our weekend.  Last year, we snuck and my husband and I decorated a cake for a girl who we now count as our daughter.  She is actually the fiance' of a friend of ours son.  He too is thought by us to be our son, so of course we love his fiance just as much as we love him.  So this year we decorated her birthday cake again.  I love to decorate cakes.  It truly is a passion of mine.  One that I can do fairly limitedly now do to pain and lessening strength in my hands, so when I get a chance to do one, and my husband is around to help, we jump at it.  Of course like last year, it had to be a beach themed cake.  For heaven's sake we are "vacationing" at the beach.  Last year we did not have it quite so easy, since we had to bake the cake and transport it from Pennsylvania to the vacation destination, keep it a secret, and then decorate it in a unfamiliar kitchen with none of our regular tools, since of course, half way here I realized I had forgotten all my decorating necessities on the table in my kitchen at home.  This year we had a better time, in our own home with the right stuff, making the cake.  We made rice krispie treats in the shape of a sand castle, using sand toys, and graham cracker crumbs for sand.  We had goldfish graham crackers for our fish in the ocean and used taffy to make a beach ball and beach towels.  We had a ball making it, and just as much fun eating it.  The best part, Mandy loved it.  So here is a picture of the cake, my hands and arms hurt like crazy, I am incredibly wiped out, but for the smiles and fun we had, it is all worth it.

Sometimes it is just all worth it in the end when you get a smile.  Now, we have to start thinking about how we are going to top it next year.  Please take time to enjoy your holiday.  Remember those fighting for our freedom.  Be thankful for the flag and what it stands for.  Be kind to yourself, rest, do not push to much, and just let it happen.  Gentle Hugs and Happy 4th of July!