Of Storms and Peace

Navigating this road called life

Thank You

I thought another post was due. I use this blog to work out my frustrations about things a lot, it’s very therapeutic but if I only blog when I’m frustrated it leaves for one sad story and it isn’t how life is all the time. Sure there are some very sad, frustrating, and even terrifying moments, but there is also a lot of hope and love and so many things to be grateful for.

Yes, I’m doing much better now since my last post… I want to thank each of you who prayed for me and spoke truth into my heart, reminding me where my strength lies and that doctors are not God. He is bigger than all of this. You reminded me that I can do this, no matter what the outcome is…

I’m much more at peace. I can’t say yet that I am looking forward to this upcoming appointment, or that I have any hope that it will turn out the way I would wish. But that is just the way it is. I don’t like to think about it too much, and it is possible I will let my nerves get the better of me again between now and then, but for now, I’m at peace.

I’m finally able to again center my focus on preparing for vacation and forming ideas for dystonia awareness projects for the month of September… Have lots of dreams and ideas for both. My mind is happy when it is used for creativity.

Unless something else comes up, I expect my next blog post will be about my appointment. My therapist suggested I blog about it no matter what the outcome sooner rather than later to help me get it off my mind and be able to focus on and enjoy our vacation better…

Then next post after that will most likely be an exciting announcement of what my September project will be for this blog. Keep posted. =)

Thank you all again… Your prayers and encouragement and admonitions really did make a huge difference when I needed it so badly.

Anxiety

I had a melt down this morning.   I holed myself up and bawled my eyes out.   It was over stuff I normally take in stride and manage fine.  I was mad at myself for being so weak as to not be able to handle it, worse yet, to feel the need to hide, to feel trapped and want to escape.  I was disgusted at myself for not being able to cope and just deal.

It just keeps building, there have been all sorts of things come up, some of which I tried to blog about but couldn’t seem to come up with the right words that were appropriate to share in a public blog… it seems like every other day lately I’m getting upset, overly upset by something, things that are out of my control.   Most of these things alone seem dumb to get worked up over, but add them all together it seems unbearable…

A while back my husband told people who hadn’t seen us in quite a while that I’d had a “good” summer… I was totally shocked and mystified that he would say or think that. My condition continues to deteriorate and I am more disabled than ever… this summer has been the worse yet… I just couldn’t believe my ears and was really upset because I was afraid that if he had that “attitude” when we went to see the new Movement Disorder Specialist (MDS) that she would have all the more reason to think my illness is all in my head.     A lot of tears and frustration and conversations later we finally were able to see each other’s point of view a little better, and he has a very valid point, now that I have meds that keep my tics under control I am better in that respect, I have done much better this summer than he had feared I would, the tics were becoming so violent, and noisy and disruptive and now they are much calmer.  Ok, I “get it”… but it took me too long to calm down and not be so upset.

I’ve let myself get unduly worked up over something as silly as a wheelchair…  the tires have started disintegrating, you just touch them and more stuff falls off… I didn’t know how many more uses I could get out of them, I feared if I were to try to go over gravel or something rough that would be the end of them. I need to have a reliable wheelchair to use for vacation… the medical supply shop gave me a quote that cost more than buying a whole new wheelchair, and there are other things that will need to be fixed or replaced on it sooner rather than later… We opted to try to just buy our own tires… that has been a disaster, no one can seem to put them on, one place suggested getting bigger ones, but common sense says that if we do that they will pop off just as soon as I try to go over rough terrain…  Come to find out, solid tires are way more of a pain than the regular inner tube tires…   At the moment the chair has only one (old) tire on it, so it is totally unusable. Don’t know what our next step will be, and it’s looking les and less like I will be able to use it on vacation and will have to use a borrowed one.  I had so wished I could have bought a new one, and we could have avoided this mess, but insurance won’t pay for one unless I’m using it all the time… so, we have to wait until I can save for a new one… which may be a long time.

Sunday morning I woke up and realized NEXT WEEK is the week where my toddler has his root canals done and I have that all important first apt with the MDS and then we leave on the first real vacation in almost 6 yrs, with a 10 hr drive ahead of us…   I NEVER would have scheduled all of those in the same week on purpose, it was just what was available for all of them and we took it.   I don’t want to put off those appointments any longer, and certainly don’t want to forego the vacation, but it is pretty overwhelming…

So today, I fell apart over other things that were unexpected and not quite planed for for this week… stuff I usually would be happy about and enjoy, but instead I was beyond overwhelmed.   WHY??!!  I know everything added up equals a lot of stress, but I think there is a strong current of growing anxiety about my MDS appointment that is coloring everything…  it is really getting to me.   I have no reason to hope that it will go well, and in fact, I’m fighting being afraid that it will go very very wrong and she will insist I quit taking the one Rx that is helping me (because with true conversion disorder supposedly no meds can help, unless it’s an antipsychotic) and concerned that the Psychiatrist and my Primary Dr agree saying that the MDS knows best???  Seems silly to worry over something so preposterous, only it isn’t, it happens more often than it should.

I realize I’m having more and more trouble each day keeping my focus on trusting God to work through this.  I don’t want to get hurt again. I don’t want to have yet another Dr be dismissive of me.  I want to be heard. I want a dr who will actually try to help instead of just referring me to go get counseling.  I want a real diagnosis of what really is going on by a Dr who is respected….

I have a little over a week yet, is this stress and anxiety only going to build more?  I can’t handle things very well as it is.  For those of you who pray, when you think of me, please lift me up in prayer!  I need His peace and rest.  I need to get through all of this and come out on the other side the better for it.   I need to be able to sleep and get the rest I need, and I need to be able to be mommy and smile and have fun with the children and not let my worry and concern overshadow our days.

I need the anxiety to leave.

 

 

Unexpected Twist

I can’t wait to see my therapist tomorrow. I wish it was today. I’ve gone nearly two weeks without seeing her and was fine, was glad for the chance to space out my visits, until last night. I have hit a very unexpected and unwelcome psychological road block. I never dreamed this would come up and be an issue. 

Last weekend my primary doctor did a routine blood draw for the hyperuricemia and suggested l switch to a different NSAID that lasts for 12 hours for more consistent pain relief. I thought it through and consented. I took my first pill Sunday morning after hurriedly reading through the insert that came with it.  That paper had a lot of alarming things to say. But the worse part was discussing the dangers of ulcers and bleeding of the stomach especially in the elderly and I suddenly wondered if this was the medication that killed my Grandma.

I don’t think of it often, my grieving is long behind me, I only had thought of it recently because of that assignment I had a few weeks back to write a timeline of tragic events in my life… I had been with her when she started coughing up blood and I was quickly ushered out of her room so they could work on her… I was there when my Grandma died, at least, I was in the hospital waiting room when it became a life or death emergency and there was panicked nurses and doctors running down the halls… I was wishing my Mom and Uncle and Grandpa would hurry up and get there… they didn’t make it in time.

She had hurt her back trying to open a stubborn window a few weeks before.  She was in agonizing pain with it and I had come to stay with them to help out, and then it all ended like this… She had rapidly declined physically and mentally and whatever pain med she was on eventually caused such an ulcer in her stomach that she bled to death…

Last night I was taking my pills before bed and decided against taking the new pain pill… I’m not afraid of it killing me if I take it properly with food (at least, I don’t think I am), but it was super late and I just wanted to go to bed without worrying whether I  ate enough of a snack or laid down too soon after taking it (in part they had blamed my Grandma for not sitting up for at least a half an hour after taking her pill for it doing such damage to her stomach)… and so I suffered even more than usual with the pain waking me up throughout the night.

The truth is, I don’t know if I will ever get past this pill reminding me of my Grandma’s death. I really can’t be reminded of that twice a day with a nagging concern that I’d better be extra careful how and when I take it. Physically I would probably be fine, the Dr seemed to thinks so, but psychologically I’m not so sure…. I think I will be better off going back to what I had been using, I know my body can handle it and it doesn’t remind me of a time and details I would much rather forget.

Coping with Comorbids

It has been a day crammed full of things to do… I have multiple projects I’m trying to wrap up, most in preparation for our vacation trip. However, the main event of the day was that we took the 3 girls to the dentist for a regular cleaning/check up… NO cavities for any of them, whatsoever. wonderful news after what my toddler is going through… It should have been a happy occasion, but my middle child (6 yrs) totally had a panic attack when she saw her 4 yr old sister choke and spit out purple stuff, and then it was all we could do to get her (the 6 yr old) to consent to her cleaning and exam… poor sweetheart, there were lots of tears and rapid breathing…

I guess I need to back up a little, most if not all of you know I have a tic disorder as well as the dystonia. My oldest daughter (7) has a tic disorder too, it’s genetic, runs through my mom’s side of the family… tic disorders often come with what they call comorbids, other conditions and disorders that like to show up too, among them are things like sensory issues, ADHD, OCD, Anxiety, etc… Several of my family members have signs and symptoms of varying combinations of these things, they never went to the doctor or got a diagnosis for them, their tendencies toward them were just considered part of their unique self… Now, because of my daughter’s tic disorder I’ve learned so much and it was a relief to put two and two together and realize all of this followed a known pattern.

So this brings me back to my 6 yr old, who doesn’t have tics that we’ve noticed, but she she seems to struggle a bit with some of the comorbids. She has always had a bit of sensory issues, some of which she has grown out of, some still bother her. Used to she would wake us up in the middle of the night all out of sorts because her blankets weren’t perfectly smooth… She hated getting dirty, and hated (still hates) getting sprayed with water… Like some other family members of previous generations she can be particular about her clothing and her socks have to be put on just so… I’ve been thankfully hers isn’t severe. But I was more concerned when I started realizing she seems to be struggling some with anxiety… Putting her socks on just so may be annoying but I know how to do it (she says I’m the best at putting them on, the little dear!) but anxiety I’m at a loss to know just how to help her through it. So, today wasn’t a surprise, but it was still so sad and difficult to get through. My heart just broke for her as I tried to comfort her and give her pep talks encouraging her it was all going to be ok, and I just prayed that she wouldn’t have cavities and need further dental work done!

As a reward for braving the trip to the dentist we ended up going to Mc Donalds and letting them play on the playground… That seemed to work wonders for drying the tears and turning the frowns into smiles. After a good nap she seemed to be fine, though she tells me she doesn’t want to go back to the dentist any time soon! I don’t blame her, but really hope her next visit won’t be so traumatic.

Topsy Turvy and Endlessly Busy

Last week I told my therapist I wouldn’t mind if life got back to “boring” for a while. Just way way way too much going on…

Just these past few days I went from happily making plans for our upcoming vacation to being numb with shock with the news I got from the Pedodontist about my toddler yesterday… I’m still working through it all. It is likely however unless a miracle happens that he won’t get to have any work done until after we get back from vacation and so somehow I need to figure out how to lay aside thoughts of root canals and crowns and multiple visits etc, and try to get back to planning and preparing for our vacation. Even though there will always be a nagging worry in the back of my mind that he will end up being in a lot of pain or worse while we are gone.  I really really wish it could have been all over and behind us by the end of this week or next.  But that was a far fetched dream.

We leave for vacation at the end of August. I’m incredibly excited and hopeful about it but in the meantime the calendar is crammed with appointments between now and then. From mundane things like eye exams to the ever looming appointment with the movement disorder specialist.  In addition to all the preparing and going to appointments for everybody I am also doing my best to enjoy life to the fullest that I can and spend time making memories with my children, and of course there are regular chores to be done around the house as well.  The days keep flying past and I can hardly keep up.  There are so many different directions I want or need to go in at once!  Family, fun, dystonia advocacy, appointments, chores, records keeping, filling out forms and making requests…  of course all this must get crammed in when I’m feeling up to it and not having dystonic storms or so tired I have to nap, trying so hard to ballance things that need to be done and I want to do and being careful to pace myself  …and then  there is the never ending unexpected extras like having it pointed out to me that my wheelchair is falling apart. This time the tires are disintegrating. Ok, do we try to get it fixed or replaced? We only have a few weeks left before leaving for vacation and I need wheels. Thankful every so thankful that my mother in law offered to let me borrow the one they have if mine isn’t ready to use by the time we need to leave. (Thank you!) That did relieve some of the stress that whole new development was causing.

In the midst of all this is list making, supply getting, dreaming, and packing for our vacation. Ahhhhh… VACATION!!! We have not had a proper one in five (or is it six) years! We are going to the place that I grew up going to, the same place we went for our belated honeymoon too… So very many memories, so much nostalgia…  it will mean a 10 hour trip to get there, but I’m hoping it will very much be worth the risk!  My dear sister agreed to come along too, so while we will have seven people crammed in our little van we will be in good company and have extra help all around. We all are excited. I can’t wait to see my children enjoy what I grew up enjoying.  I’m looking forward to making happy memories there with them!

So yes. Life has been and will continue to be crazy for a while. If I don’t write much for a while that is probably why, just too many things demanding my time.

Swimming Against the Current

Finally! I’ve been itching to get my hands on the computer and blog and now finally it is available and the kids are going to bed now so I can just write this all out.

I saw the psychiatrist again today. I do believe this was my third visit. Each time feels like I’m swimming against the current, never getting very far and ending up exhausted and frustrated…. Not that I’m not being cooperative, just that I have to explain things over and over again to someone who doesn’t quiet understand what I mean or have any idea the magnitude of what all goes one and how much I really am affected by my movement disorder. I do want to say I am grateful, I am honestly grateful that this woman hasn’t been dismissive or just passed me on to someone else like so many other doctors I’ve encountered. She is trying to help. She did recognize right off that my tics are genetic and put me on a medication that helps. But the dystonia isn’t something she is super familiar with, and so for her to try to understand it and figure it out and decide whether I have psychogenic causes for it has been very difficult. I feel like this is way more work than it needs to be. Sometimes it feels like she is being judgmental and jumping to conclusions, I keep having to remind myself it is more probable that she is just trying to sleuth out any clue she can to put the puzzle pieces together. Problem is, it feels she is putting too much importance on one piece and not enough on another, or maybe she thinks one should go on the edge when really it fits in the middle?

I was wracking my brain trying to come up with an analogy and the best I could come up with was that it’s like trying to tell someone who has only ever used a manual type writer all the things that a computer can do. Or something like that… my movement disorder is so complicated, my eyes alone have a whole list of different ways they or the eyelids spasm, and this stuff is throughout my whole entire body!

Our visit started off with me having to wait since she was 30 min behind… I didn’t mind too much, the sun was shining finally and it felt so good warming my back. She followed me as usual to her room clear at the end of the hall. First question was about my leg twisting in and where does it twist and what all is affected? She then informed me I was using my cane on the wrong side and gave me a lesson in cane usage. Hey, I come into these sessions determined to have an open mind, so listened and responded that I was willing to try out doing it “right” and was genuinely serious about that. If I’m making myself worse by improper cane usage I am willing to change for sure! I wasn’t sure if it would work, I could only say I did it that way because it “felt better” but because of the way my body spasms I really have good reason to use the cane the way I do. But it’s worth a shot!

We talked about how the medication for the tics seems to really be helping, the tics at least. She noted that I wasn’t twitching as much, and my head wasn’t turning like it did my first visit … inwardly I noted that she must have missed the three times I had already had a neck spasm, they weren’t sudden violent jerks like the tics from prior visit, but a slow pull and without thinking I had covered it up like usual making it look like I was eyeing the books on her shelf… of course, within a few minutes of her comment my neck spasmed again and she assumed it was by power of suggestion! I then explained she must have missed seeing my prior spasms and she then commended me for being able to cover it up, saying that was good at least I could do that … I didn’t know what to make of that comment, it doesn’t mean I’m not in pain. My back and leg and foot and neck were all spasming and staying twisted and it was all undetectable by her… I was physically uncomfortable and in pain, but it wasn’t blaringly obvious….

Conversation went on about other things, at one point we got hung up on my eye spasms, I tried to explain stuff I’ve explained before, and more. Then on to my storms and how bad they can be. She didn’t like that I don’t have much of a social life and told me I need to get out more, there is a world of reasons that is very difficult for me right now, but the main one I gave was fragrances being a trigger. Amazingly enough, she, and someone else she knew also get migraines from fragrances, so speaking from experience she was encouraging me that for small group things to simply request no one wear perfume… sigh. That does help, but doesn’t fix everything. It’s one of those things probably only someone who has a debilitating disorder or other physical limitations can even begin to understand I guess. One of those things I just wanted to be done talking about. It’s not like I am naturally a recluse, I used to love socializing when I wasn’t so sick!

She gave me a new assignment of keeping a log for a month of how much sleep I get, if I eat enough, and if I have bad episodes and what I was thinking and doing at the time they come on… truthfully this is something I should have done a very very long time ago, any doctor would be glad to have it, and so again I very readily agreed to do it. It should be interesting. I did tell her I spasm all day every day, and asked what it was I was supposed to document. She is more interested in the bigger episodes, the ones that puts a stop to what I’m doing. So, we shall see how that goes!

Walking out I knew I would be carefully observed so I made sure to switch sides with the cane. Sure enough I was much more unsteady. She stood there watching me carefully and then told me that I could lean in the direction of the cane, I didn’t have to lean to the other side anymore… I tried to explain that I wasn’t leaning so much as it was the spasm I have twisting my back that direction like I had tried to explain several times before. I may have looked like I was leaning heavily on my cane earlier when I had the cane on that side, but truly most of that was purely back spasm. I admit that last exchange about the cane was so very frustrating. I just keep trying to explain stuff and it’s not getting across in a way she can understand it I guess.

I am truly anxious to see the movement disorder specialist… it will be good to finally see someone who has somewhat of an idea what I am trying to say, and hopefully will recognize what she sees for what it truly is. I’m so very very weary of trying to explain it all. I really wish (and hope some day) that they teach more in med school about dystonia, and in a realistic way. It is after all the third most common movement disorder behind essential tremor and Parkinson’s disease.

Maybe all this frustration and even exasperation over appointments like today is helping me become more comfortable and more hopeful about seeing the new Movement Disorder Specialist, I don’t know. I feel I must be missing something or needing to learn something by this. Maybe better ways of communicating what dystonia is?? But then again, if They don’t believe it is all caused by dystonia then that puts a damper on it. All I know is, I dread going every time, I come away frustrated, but yet hold gratitude that she helped with the tics and maybe that is all that she was meant to help me with.

A Blubbering Mess

Been pushing myself too hard physically, been going through a lot of stress preparing my stack of records for the new Movement Disorder Doctor, been apprehensive about that upcoming appointment, and to be honest, also been dreading my appointment with the psychiatrist this week.  But all this pales in comparison to the news we got today.

Long story short, we were told that our two yr old has a lot of cavities in his teeth and some of them pretty bad. It was recommended that he gets put out to get the whole lot of them worked on. I was not surprised by the news, and I was pleased at how sweet and good they were with working with him today. But still I cry every time I let myself think about it. My poor baby.  Now we have this looming over our heads.  I look at him and remember how sad and upset he was today while we were waiting to be seen and know that being put out will be scary for him and it breaks my heart.  It will be scary for me too, knowing how severe of an allergic reaction he had to a prescription medicine a while back… what if he has a reaction to anything they give him?….

I would do anything to take this on go through it instead of him… I would rather go through all my suffering than watch my children suffer…

Yes, I’m a a blubbering mess and super stressed, with a whole list of odd random things that really shouldn’t be bothering me so badly. Patience level is too short. Deep breaths. Praying for my baby and that we can find a good Dr to work on his teeth and that we can get it done and over with soon.

So Thankful

A few minutes ago there was incredible amount of giggling coming from my bed…. and just now my toddler came to me and said “Ma! I wan breakdast!” A sign the night is officially over. I survived! Somehow, by the grace of God I survived the night solo parenting while my husband is away on a business trip.  I lost count how many times I got up taking care of one child’s needs or another.  The appreciation I have had for all my husband usually does during the night has deepened immensely. How does he ever get any sort of sleep on the nights I keep waking us both up by my spasming and the children repeatedly cry out for him? God bless that man!  I certainly will have to take a nap today. But for now I’m up and need to put wet sheets in the wash and fix breakfast and….

I thank God all the time for the special gift being a Mom is to me. I love and adore all four of my little sweethearts and so glad I had them before getting to be as sick as I am now… especially glad for the fourth one who was a surprise, a very very much wanted child, but didn’t know if I was well enough to handle another pregnancy. His turned out to be high risk pretty much the whole way through but he is so worth it! These little people are the reason I get up every day, literally. They are so full of life and love it is impossible to be sad or down for long. They are the reason I keep trying, they are the motivation to keep fighting for better care long after I want to just give up.

I can’t give up. Their daily needs keep me going, while their future need keep me always thinking ahead.  Being a parent of four small children can be difficult in and of itself, but when it is a physical struggle just to take care of myself sometimes it becomes especially challenging. However, I am so glad for it and incredibly thankful.  On one hand, my children do have it hard because of me, and I do struggle with guilt at times because I can’t do things with and for them that “normal” moms can… but on the other hand? They lead a richer and fuller life now than I could have ever given them on my own. They have their Aunt and Grandparents investing a lot of time in to their lives and education. Their upbringing is a team effort by a whole “village” of people who love them dearly. Something that wouldn’t have been if I hadn’t gotten sicker and hadn’t moved back “home” to be closer to family. I have literally watched them blossom since moving here. I’m thankful that they have adapted and are doing well despite having a mommy who struggles so. I am blessed by the empathy that each one is developing, and their normal happy kid antics keep me laughing.

I just now realized that last paragraph could be taken by a psychiatrist as enough reason for “secondary gain”… ugh. This was supposed to be a positive happy post and then that comes to haunt me. If anyone thinks for a minute that I would prefer my children get to experience their first trip to the local zoo without me or their first hay ride while I stay behind at home have another thought coming. It breaks my heart not to get to be there for everything. It is difficult to let go and let someone else do projects with them or get to teach them things that I feel should be my privilege as a mother. I’m learning to let go though because I know my personal wishes to get to be there for everything will only keep them from getting to do things.

Back to happy thoughts. I am so glad I somehow get to be “Momma” to four of the dearest children on earth. They keep me going. I’m glad we have extended family and friends who love them and are willing to step up and help when needed. And most of all, I am so thankful for their Daddy who loves us all and takes care of the night shift so faithfully.  I certainly couldn’t do it without him. Thank you sweetheart for all you do. I love you!!!

Have to

Got up. Went back to bed. In and out of sleep. Husband left for work. Fell back to sleep, woke up, I must get up! Pain, spasms, sleep… Ah! Really I must get up! Must eat and take meds, must take care of kids. Out again. Finally toddler comes and joins me. Pantless, no diaper, says he doesn’t know where a diaper is. Momma instinct finally overrides the extreme pain and misery. Got up got diaper, and pants, why didn’t Daddy put pants on him?

Have to force myself to stay up, I have children to take care of, a party to prepare for. I keep it simple, but have meat to cook up into BBQ/sloppy Joe’s… have two cake mixes to bake… MUST do this. I can’t let my precious sweetheart down.

I can’t seem to keep my mind together… eyes are spasming making focusing hard. Trying to read emails or face book, my mind puts all the words in a jumble after the first sentence.. having a hard time even typing my own thoughts here… hope I don’t mess up the cake recipes, thankfully they are simple.

Pain levels are so high. That new med for the Hyperuricemia must be working. Spasms won’t leave me alone.

Wait a minute, I’m complaining …. that’s not gonna help any.

Preschooler shows me a “trick” she says she had to work on it for a long time. Aw. So cute! Toddler climbs up on me with a toy stethoscope “Momma! I wan to take your temperature!” These sweethearts make it worth pushing myself too far.

Time to muster up all my hidden reserves, time to get myself upright and propel my body forward  …there is a pile of wet bedding that needs to be put in the washing machine… there is a list of things that must be done. Body, did you hear that? I have no time for your acting out and misbehaving… and turn the pain dial down while you are at it ok?

Pep talk, pep talk. Any which way I can convince my body to hang in there and cooperate even a little just a few more days!

Not Enough

If strong will and determination was all it took I would be living a normal life driving myself places, hiking for miles, getting creative in the kitchen, attending Church every Sunday and getting involved in social events…

But it’s not enough.  I keep hoping that if we find and treat enough “organic” disorders and illnesses I will get better, or at least somewhat so. Sure, it is working to a degree, my tics are no where near the intensity and frequency they used to be, but it hasn’t improved my overall condition. Doctors and therapists and everyone take my report that the meds are working as wonderful positive news, and it is, but it doesn’t mean I’m getting better.

My over all condition continues to deteriorate. Sure I have “good” or more accurately “better” days, and I do hit plateaus for a few weeks at a time where I get a break from getting worse… sometimes the decline is more imperceptible than others, but sometimes I can literally feel things degenerating by the minute…. technically that may not be an appropriate term, as I have been assured over and over I don’t have a degenerative disease, but it feels like it more than sometimes.

It is impossible to remain upbeat and hopeful all the time, especially when hopes and plans get ruined time and time again.  It is difficult to be all chipper and happy when night after night is full of spasms and fitful sleep… and then after a night like last night where I kept waking my husband and myself up with the more violent sort of spasms and jerks and struggling just to breathe.

It looks like I need to readjust and lower my expectations again. It seems like once I finally get comfortable and accept the way things are they get worse and I have to refocus. I will get there. I know I will. There are plenty of things still to enjoy and be grateful for. But, I don’t need to pretend all is peachy. It is normal and even healthy to grieve over losses. Sometimes tears are needed. Sometimes taking a break from everything is essential.

Today I mourn the loss of my hopes and plans for the weekend. I am saddened that my body again has disappointed me and my children. I still yet have to try and discern if it is safe to be left alone so at least my husband and children don’t have to give up going to Church too… 

I will let myself grieve. Determination and strong will may not be enough, but I will not allow myself to wallow in self pity. I will find things to be thankful for and I will still hope for a better tomorrow.

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