Pain. Ugh.

This post will be mostly about ME, and tangentially about my sweet bug. Before I begin, I should do a bit of an update. Ian will be moving from his two-person roommate situation into a three-person one, and will be moving into a new apartment complex. I had the opportunity to look at his new apartment (which he moves into this coming Monday), and am very pleased by its roominess and also its large backyard. I think this will be a positive move for Ian. A three-person set up tends to have more stable staffing, and is better money-wise. I hope to be able to go over tomorrow (Sunday) to help his caregiver and her family move over some small things like his toys, clothes, kitchen items, towels, etc, which leads me into the purpose of this post.

I suffer from a chronic pain condition which waxes and wanes like the moon. Some days (even weeks at a time), the pain is very manageable, and I can live a more-or-less "normal" life. The source of my pain is primarily in my neck (I will spare you the medical details; suffice it to say, my neck is a mess), but it radiates into my head and causes severe headaches. Secondarily, I have a mild case of fibromyalgia, chronic fatigue syndrome, and Hashimoto's disease (basically low-thyroid) but these really don't cause much difficulties in my day-to-day life. What really gets me is the headaches. I'll have many days in a row where I'm basically out of commission and bed-bound due to the pain, and the medications (although I'm incredibly grateful for them!) make me groggy and often nauseous. Many things set off a pain cycle: too much exercise like walking or lifting (I'll get back to that), too little sleep, or too much stress. It's interesting to note that all these health issues began after Ian's diagnosis. It's as though the emotional turmoil manifested itself in my body. Since I didn't have the leisure,the desire, or the mental robustness to "get rid of" or "fix" the primary problem (Ian's autism), all the stress, sorrow, and sheer exhaustion of living with and loving someone with a severe disability went straight to my immune and muscular/skeletal system. I did start having migraines when I was 29, but the big guns of my health problems started around 39-years old (I am now 55-years old.)

I won't go into the long drawn-out drama and trauma of trying to find a sympathetic doctor who didn't assume I was a narcotic-seeker or addict, but I did finally find a kind, understanding doctor who really listened, and life has been exponentially easier in that way. I have done many, many, MANY different things to deal with my pain, but nothing has yet taken the pain away for good. So I deal with it one day at a time. What has brought it to the fore lately is the birth of my darling granddaughter. Now that she is almost 7-months old, and weighs nearly 17 pounds, I have discovered that if I carry her for even a short amount of time, I get a headache. This discovery has been very hard on me emotionally. I mean, what Grandma doesn't want to carry  her precious grandchild around on her hip? I AM able to cuddle her sitting down, but it restricts my ability to care for her when I'm alone so I can give my daughter and her husband a break. I love that little girl to pieces, and anything that interferes with that relationship seems simply unacceptable to me. Obviously, whining about it and wishing things were different does not help in the slightest, but I have my rebellious moments where I JUST WANT WHAT I WANT! And that's to NOT have this darn neck and this darn pain. It just sucks. So, I made an appointment with a doctor that does a procedure where he basically cauterizes the nerves that cause the pain, and I get a few months of relief (I have had this procedure before years ago, but have avoided it due to the painful recovery time.) Although the procedure is painful, I am going to do it because I'm tired of being in bed for two or three days after caring for my granddaughter.

This pain condition obviously interferes with my relationship with Ian as well. I like to visit him at least every other day, and if I'm flat on my back in bed groggy with medications, I can't do this. Lately I've also been doing Ian and his roommate's laundry due to washer and dryer problems at the apartment, and there are days when they have a back up of laundry, and/or I have clothes that I have washed at my house that need to be at their house. Luckily, Ian's primary caregiver has a lovely family that is willing to pick up and drop off laundry when I'm out of commission. The laundry problem will change when Ian moves as there will be two people with the boys at all times, which leaves one person to deal with the laundry, so that will be off my plate. I have visited with Ian during a headache "flare", and it ain't fun. He doesn't understand, and wants me to do and be what's usual, and if I just lay on his bed, or sit on the couch, that doesn't fly. All in all, it's not a good time for anyone.

As I write this, I am struggling with a massive headache, am in bed, and am pretty groggy (sorry if this post is disjointed), so it's obviously in the forefront of my mind. I have to say that my faith in God helps enormously. I KNOW that He has me in the palm of His hand, He loves me, He feels and  understands my suffering, and He is always bringing help when I need it. I feel awful sometimes complaining when I know there are people with so much more pain and suffering in their lives, but I guess this is MY blog and I can cry if I want to (grin!) But I AM thankful for God's love and care, and the love and care of my loved ones. My husband is an absolute rock (especially since he is suffering with his own health issues), and my daughter and parents are always understanding. My dream is to be totally well, able to watch my granddaughter at the drop of a hat, and visit Ian whenever I want to. But THY will be done; not MY will. I know there is an important lesson to be learned in all this, which I can't think of at the moment as my mind is cream cheese. Perhaps I can wax more eloquently once the meds have worn off.

Blessings and Peace to all of you. I will catch you up once I am temporarily headache-free, and Ian  has been moved. There are new roommates to meet and become friends with, and a new living arrangement to adjust to. Life is never boring.

Some introspective thoughts of a deep and somewhat morose nature---but with good stuff too, like LOVE

Well, it's a new year with the beginnings of all the usual changes and challenges, joys and opportunities. It's been a bit rough for me psychologically and physically, as I have been feeling a real anticlimax with the end of Christmas, and the blah weather. Gray, gloomy, and cold have never been my friends. Also, my chronic headaches have decided to ratchet up a few notches, and I have had several days of severe pain. I notice that when I carry around my granddaughter too much, I get headaches. This is a source of sadness to me as I LOVE to carry, hug and cuddle her. I guess I will have to hold her sitting down, and of course this seems like a simple solution, but the idea that it hurts me physically to carry her bums me out. Because of the pain, I had to take lots of Prednisone (along with my other pain meds), and that always makes me grouchy and weepy. And upon whom do I take out my grouchiness? Well, upon my long-suffering husband of course. And when I gripe at him, I feel guilty, and then I feel more grouchy, and then you have the vicious cycle. Sigh. Thank the good Lord, I am always aware that these feelings are fleeting (This Too Shall Pass), and I will feel better eventually. It's pretty crappy when I am in the middle of this muddle, but at least I am aware that it's temporary.

Lots of new stuff on the Ian front. He will be moving at the end of the month to a three-person apartment with two other young men with autistic-like behaviors. This means saying good-bye to his current roommate Ron, who I love to pieces. Fortunately, he will be living in the same apartment complex as Ian, so hopefully I will be able to see him from time to time. I do worry that this change will be hard on Ian. Although he is uncharacteristically good about changes (for a person with autism), there are usually some issues with any big ones. And this is a BIG one.

My heart strings were pulled the other day when a caregiver told me that when Ian is told that I am coming to visit, he will stand at his window looking out waiting for me. Sometimes it seems that he doesn't really seem to need me to visit him, but that's only because he expresses his feelings so much differently than "normals" do. My husband had to drop something off yesterday, and not having time to stay, wanted to do it without Ian knowing he was there. Unfortunately, Ian was in his room which faces the parking lot, and John saw him through his window. My husband quickly got back in the car, and asked the person who was driving to deliver the item he was dropping off, hoping that Ian had not seen him. Later on I called to see how Ian was doing and told them about the item outside the door, and the caregiver said "Oh, that must be why Ian was tapping on the window." I can tell you, I got tears in my eyes when I heard that. He had seen my husband, and was greeting him. How can these things not just tear your heart out?

In my more morose and pessimistic moments, I obsess over and worry about the time when John and I die--- that there will be no one to love our son as much as we do, which breaks my heart. When I am aware of these thought and feelings, I turn it over as quickly as possible to God with the assurance that He loves Ian even more completely than we ever could imagine. Somehow, I have the faith that it will work out, and that Ian will always have love in his life. In the meantime, we will love him with everything that is in us, and do the best we can for him while we are still here. Faith and Trust are such important and vital things for us on this journey with autism.

Love the people in your lives. It's so important. You don't have to "do" much; just be the loving presence that God wants you to be. Life is fleeting, and we are not assured of a tomorrow, so get on with the loving while you can. My favorite motto is "Life is a school, Love is the lesson." Amen and amen.