Forgive my grumpy and irritable attitude! I know I need to give an update about our doctors appointments. You all are such prayer warriors for us. However, I am grumpy and irritable. My fear is when I write, that is what will come through! So I’ve not wanted to write and it makes me grumpy and irritable just to sit down and try to write. And after all, sometimes even on my blog, I try to make life look pretty when it’s not! Tonight someone asked me how I was and my natural response was I’m good. Such a lie! But I said it anyway! Then I was convicted and changed my answer to I’m okay! That was a little less of a lie!
The Appointment
Chloe struggled after her headache clinic appointment. She actually cried all the way home and the mood still exists today. For her, it was an emotional realization that her life is probably always going to be headaches and ER visits. There is probably no magic medicine that is going to get rid of her headaches. Chloe was sad. I was EXTREMELY frustrated.
At the appt, we met with a psychologist who educated us on ways to try to focus on things other than pain. We met with a doctor who educated us about biofeedback. The headache specialist still hasn’t given us much of a plan other than go to the ER after she has taken her abortive medicine three times in a week. His next step in treating Chloe’s headaches is to begin process to get insurance to approve the use of Botox injections, which he says will take approximately six months. Unfortunately, Chloe’s insurance is about to change so there is no need to even begin the process until the changeover happens in June. Also, there is a contraindication to use botox in patients with neuromuscular disease. Somehow, despite the fact that I have filled out paperwork for this doctor to communicate with other doctors, it fell in my lap to contact the neuromuscular doctor to seek his opinion. Unfortunately, the neuromuscular doctor says given Chloe’s history with medicines and the concern that botox brings to neuromuscular patients, Botox should be the last line of treatment and then should be administered with great care. So….we have an issue. Do you choose to try Botox and risk complications? Do you avoid the use of Botox and always wonder if it would be the magic we have been looking for? Do we try nerve blocks or trigger point injections? But the reality is any of these things are only temporary relief and must be repeated regularly. So while what we are going to do is in definite limbo, our options are in short demand right now. So it looks like ER visits are in Chloe’s future regularly. According to this doctors recommendation, I should probably just rent a room in the ER because Chloe would be there on a regular basis. See…I told you my grumpiness and irritableness would show through.
Chloe’s headaches do not act like regular migraines. He calls them chronic migraines. I had no clue that many people lived with debilitating headaches that kept them from their normal life on a regular basis. Evidently, those people do exist and evidently chronic migraines exist too. In the month of April there were 6 days that Chloe’s head did not hurt to some degree. With people who struggle with chronic migraines, this evidently is fairly normal amount of good days. In my opinion, I think that amount of good days versus bad days is absurd! There is nothing normal about that!
Where does that leave us…in limbo!
Where does that leave us now? In limbo! So, we are anxiously awaiting our appointment with our local neurologist. I think mom and Chloe need to have time to discuss and be heard and receive wisdom from her! I also think we might seek a second opinion before proceeding with any medical procedures. This is all so new and so confusing and overwhelming to us right now. It feels huge and daunting and scary. Unfortunately, the longer we stay in limbo the longer Chloe continues to struggle with these horrid headaches.
Zine’s appointment
We saw Dr. O today. She very plainly told Zine that she would NOT recommend him ever coming off of blood thinners again. Blood thinners are for the rest of his life. She believes them to be developing in his lower extremities and traveling to his lungs. That definitely does not warm my heart! I keep thinking that maybe they are developing in the lungs but she does not believe that to be the case. We discussed the use of inserting a filter but she feels very strongly that he needs to remain on blood thinners. Of course, with blood thinners, there are always concerns you have to watch for. On blood thinners, minor falls can turn into major catastrophes. If one didn’t have MS, then it might not be as big as deal. But when falls are a fairly normal part of life, this is disheartening. Internal bleeding is more dangerous than external bleeding. A fall and a bump on the head can turn into a major ordeal to say the least. No razors other than electric razors. No using sharp objects like knives. No putting knives in a sink or someplace where you might not notice them. So the little nuisance of things like knives in kitchen and razors are no big deal. Easy peasy to handle. The falls, well, that is a completely different story.
My irritability and grumpiness
I am spent. I have gone non stop since Zine was in hospital with rarely a moment to sit down much less process emotions. Between medical appointments and graduation life has been chaotic. I am on edge. Tonight we come in from graduation and I was going to move the trashcans to the road. Then I notice everyone is standing at the front door waiting on me to come open it. Really, that’s not a big deal. But to me, it just flew all over me. I’m like can you not get the key and open the door yourselves. Why you have to wait on me to come let you all in the house?? My tone is short and snippy. Do you need help? No I don’t need help! I don’t even want any help!!! (That’s probably a lie but in frustration it seems like the best answer.) Argghh…I despise it when I am like this. Look at me the right way and I can cry. I definitely don’t like crying either! I want something and I don’t even know what I want. I just don’t want what I have right now. And I don’t even know what that is. Irritable and grumpy. BIG TIME!!! Not to mention…my elbow is killing me on the left side (bursa issues) and my right shoulder is feeling the stress in my body. I wore a jacket tonight to graduation and the whole time my elbow hurt because something was touching it. I do NOT have time to have elbow issues. And I would sure rather stress not settle in my shoulder! If I had a heard of pigs, I’m certain they would all have sore elbows and shoulders because these aches and pains would be cast right on over to those pigs. Can you tell…I’m just grumpy!!!!!????
Blessings Amidst Grumpy
Amidst the grumpiness, God is still giving me blessings. Last night when I walked in the door at 8:15 or so, there was dinner waiting that someone brought. Not only was it there, it like hit the spot. There have been other dinners that have been blessings no doubt, but last night I was extra appreciative or hungry or both! Today, a friend took care of Krisann for a few hours. I even asked her to go get her some shorts because I got long legged Krisann some new shorts and they were too big. I had told Krisann earlier in the weekend we had issues when her panties were longer than her shorts! She evidently has had a pretty big growth spurt. This friend did go to Wal Mart and get Krisann some shorts that fit! She also let Krisann give her a manicure and a make up job! And she emptied my dishwasher and who knows what else! I love that others can come into my house and see things that need to be done and just do them! I am blessed that others can love my kids well! I was even blessed by a friend’s tears tonight. Her parents’ health is diminishing and her parents didn’t get to come to her daughter’s graduation tonight. There are things that just trigger emotional responses and I had the blessing of being with her in her trigger moment. It actually helped me feel less alone in some of my grief. In that moment, I knew exactly what she was feeling. I was sorry she had that trigger and grief in her heart but I know that place! I was blessed to be able to share that moment with her. Just to wrap my arms around her and hug her. I have no words, but I know pain and grief and I know to be held in a warm understanding embrace brings comfort.
Hope You Identify
I hope you can identify with being grumpy and irritable. Sometimes, my human flaws show through. When I wanted to not write because I felt my mood was not great, God just said go ahead and write even amidst your grumpiness. I’m not sure what example I have set for you tonight other than being authentic even in my grumpiness. We all have days we are grumpy and irritable. I think it is good when we can acknowledge it for what it is worth. It is good when we look at our family and say mommy is just grumpy today. It’s not you…it’s me. I’m sorry for being short and I’m sorry for not being fun, but we’re family and you get to love me even when I’m grumpy! Thank goodness! And thank goodness this season of grumpiness and irritability does not last forever. I am more than ready for it to pass!
