A Small Setback

I will be traveling up to Minnesota on Monday to see my migraine doc and will also be doing this 3 day long fibro class they offer for folks with this new diagnosis. It actually sounds pretty interesting, though I don't entirely know what to expect.

A few weeks back the migraine doc's office called me and had to move my appointment from Tuesday to Friday. I was actually at the hospital with my grandma when I got this call so I made a note and didn't think much of it until recently. Then it occurred to me that he only does botox on Tuesdays and Thursdays so I decided to call and just clarify expectations for the appointment. Of course I didn't get a chance to talk with the actual doc and the people in his office told me what I already know, that he only does botox on Tuesdays and Thursdays. They also said they he wouldn't have room on his schedule until early October to do a botox appointment.

I went through the motions of explaining to them that I had a Tuesday appointment and that his office moved it to Friday, which they could also see in their computer. Unfortunately these folks don't have the power to make changes to a doctor's plan and I really wasn't very surprised. But I had kind of assumed that since this was the plan all along, as long as the insurance company said yes (which they did back in early July) and since they moved the appointment that I would still be able to get what I need.

While a little miffed and thrown by this news that I may have to wait another month and make another drive up to Minnesota, I'm not going to get too excited about it until I have a chance to sit down with the doctor next Friday. Ultimately he has ALL of the power and he can make it happen if he chooses to. Let's just hope that he chooses to be more flexible than the giant Mayo machine is able to be.

Had a Tough Week

So I've had a migraine since last Monday. Needless to say this past week has been a challenge. The rescue meds, which usually do a pretty good job are not. They take about 5 hours to make a noticeable difference and even then I'm not getting much relief. Then, within a few hours I can already feel them wearing off as the migraine just intensifies. I've been timing the medications so that I can still do stuff like visiting with my g-ma in-law, going out and running errands.

I was fully expecting an ugly backlash after all the cooperation I got during my grandma's final couple months, but still, it sucks. I'm trying to keep my spirits up but as usual this kind of a set back not only drags my spirit down, but it also makes me more irritable and leaves me feeling less hopeful about ever getting on top of the pain.

How I long for a normal life again. Will I ever have one?

A Life?

With all the craziness of the past several weeks behind us, my husband and I are trying to find our footing here in St. Louis. In addition to his entire family being here he has a few good long-time friends. We've started making plans with these people and are even starting to think about fun stuff we would like to do in the area.

It is almost as if we were starting to have a life. We've made plans for this weekend and next weekend. The weekend after that I'm going to be in Minnesota... It's sort of pleasant to think about having a life for the first time in about 3 years. To have people we know and like around us with whom we can make plans and hang out.

Say what you will about travel, seeing the country and experiencing new places, but for me, there is nothing better than being close to loved ones.

The Relic

Perhaps I have mentioned this before: my grandma used to have really bad migraines. This was back before migraine medications, when even the doctors at Mayo couldn't offer any help. Can you imagine? Now her migraines were never as frequent and out of control as mine have become but we have always shared this affliction along with light sensitivities and such.

A long time ago a priest friend of her and my grandpa gave her a relic for her migraines and she said that it helped. With her passing the family decided to make me the caretaker of the relic. I was honored that my family wanted me to benefit from the healing powers of this relic, though part of me was a little saddened that everyone agreed that out of the entire family I was in the most need, in the worst shape healthwise. My mom said that my grandma gave me the migraines, she thinks it is only right that I get the relic.

Now I'm not Catholic and I don't know what to believe when it comes to the relic. But I do believe in miracles and am certainly hoping that God decides to grant me relief from these migraines. I hope that my grandma is up there pleading my case or looking out for me in some way. She certainly knows the misery of the migraines well and that I've longed for relief from this constant pain for more than 5 years...

Old Family Pictures

So I got my hands on the box of old photographs my grandma had and am now scanning old family pictures so everyone in the family can share them. I love all these old pictures and can hardly wait to have them all scanned, organized, online and in my albums.

Plenty of these old pictures have people I don't know mixed in with the ones I do so there are lots of blanks that I'm hoping my mom and her siblings can fill in. I'm obsessed with the idea of having a good record of our history and our lives. Right around the end of last year I put together a Shutterfly site to preserve and share family photos. For the most part all of the family has joined and is enjoying the site. I have found that most of the people who actually have the old photos are the ones who don't really know how to upload them to the site. With time I'm hoping to make the rounds and help each one get their pictures up too.

It's a fun project and I feel a good use of this time when I'm not working outside of the home. I have a feeling that I'll be able to work here soon but we can talk more about that later. Today is all about the scanning so I'm going to get back to it.

What are you up to today?

It's Been A While

Well, it's been a while since my last post - practically a week. I've wanted to blog but have either been too busy, too tired or just at a loss for words every day since my last post. There has been so much to do to get ready for the funeral events. Plus there has been so much family around. It has been quite a week indeed. At times it's been incredibly stressful, at times a lot of fun, at times tiring, but it was busy the entire time.

Just about an hour ago the last of the family members left to go back home. My husband and I went over to have brunch with the group before they had to leave. As we made our way I started to feel a little lost. Since we've been settled into our apartment here in St. Louis I've had much to do between just regular family stuff, home business, and grandma being in and out of the hospital. But now...well I don't know what now.

I'm so sad that I no longer have my grandma here. I'm sad to see all my wonderful family going back home. I'm sad that I don't have a job to help me transition back to feeling normal. I fear that now with grandma gone the family won't gather all together again. Today I just feel sad.

Tomorrow I hope to begin feeling more normal again. I will go out to visit with my husband's grandma, get some much needed laundry done and hopefully start to get things organized around the house again. Maybe if I can manage to keep busy for a while it won't seem so suddenly quiet. As for the rest of today, well I think I'll just let myself be sad.

A Sad Day

Grandma passed away this morning.

The whole day has been weird as the business of death has needed a significant amount of time. My mom and sister will be coming on Wednesday evening and it sounds like most of the rest of the family will be coming on Thursday for the Friday funeral activities.

I'm exhausted, sad and feeling a little overwhelmed.

Tomorrow is my first appointment with the Reumy doc so I've been spending the evening gathering up test results from all the studies that have been done and printing off my med lists, tracking sheets and such. I don't know that I'll be able to pull it together enough to give this appointment the proper focus but I'm sure going to try hard. You know how it can be though...brain fog and all. My standards for a successful appt have been adjusted down and I'll be happy if I can make it out of there with a prescription for my much needed Bachlofen. I'll worry about the rest another time.

Update

Well, it has been a few days since my last update so I thought I should do another.

My body was beginning to kind of relax out of emergency mode as I drove to the airport to pick up my cousin on Friday morning. We had a quick breakfast and then if was off to the hospice to see grandma. It was clear when we walked in that her condition had worsened overnight. Thursday evening she fed herself, consuming her entire dinner, was awake and responding to direct questions. She even spoke. By Friday morning she had gone quite pale and her fingers, toes and lips had gone kind of blue. Her breathing was more labored and she just looked, well, less present in a sort of indescribable intangible way.

Standing there by her bed I felt this surge and I just knew I was fully back in emergency mode. I have been feeling inexplicably little pain for about a week now. I'm exhausted but am not really struggling to go on. I'm stressed, not getting enough sleep, not able to really eat well from all the stress and nausea, yet I've only had one migraine since it all began last weekend and very little pain and discomfort throughout the rest of my body. I can't explain it. The current circumstances of my days are full of pain landmines but I have not yet exploded.

I'm not under any delusions that I'm suddenly better. Be it divine intervention or simply adrenalin I know something is allowing me this opportunity to really be there for my grandma and for the rest of my family who is here and my mom who is unable to be here. For all of this I am exceedingly grateful...and I am expecting, fully prepared, there will be a hefty price on the back end.

More family has continued to arrive throughout the weekend and being able to see and share with these people I love has made the last couple days easier. We are all sad but we love grandma/mom so much that we are glad to be here for her. There is no bickering or the kind of disagreements that can occur when the head of the family is passing. Everyone is 100% behind her end of life decisions. We are all glad that she was able to make those determinations and we all would have supported her decisions no matter what they were. The energy is all so positive and loving. For all of this I am, again, very thankful. Were it any other way I think my pain situation would be much different.

Anyway, I should get in the shower so I can start my day. I hope you are all having a good weekend.

Grandma Update

We're finally moving grandma into hospice later today. The building she will be in is very nice and the staff even nicer. Those of us who have had a chance to visit already have all been impressed and pleased that a bed was available for her.

More family is coming to town this weekend. I'll drive out to the airport tomorrow to pick up my cousin who is coming on a one way ticket planning to stay until all is said and done. Honestly it will be really nice to have the extra support here. She'll be another person who isn't working or going to school while trying to manage being around for support and company as much as possible.

My body has gone into emergency mode again. While truly exhausted, I am managing fairly well. Emergency mode is only ever a short-term state, one that I am close to reaching the end of. When the bill comes due any day now the extra support of the incoming cousin is going to alleviate most of the inevitable guilt I'll feel when my body simply won't cooperate.

Of course,  there is no way to tell how long grandma has left but her doc doesn't think it will be long.

Hospital Woes

Right now grandma is still in the ICU, which means they are sort of treating her still. Yesterday the docs decided she has gotten to weak for intubation to be an appropriate treatment tool so that's out. They basically wanted to get her as strong as possible to send her home. The sooner the better as far as I'm concerned. She is on the highest oxygen setting but her 02 levels are still not great. She is clearly uncomfortable (though doesn't report pain) and she clearly is anxious. Who wouldn't be in her situation.

She doesn't know where she is and she seems a little scared at times. She knows me and my uncle and aunt, which is good. She can't answer open ended questions but I don't know if it is because she can't find the words to describe what she is feeling or what is bothering her, or if she really doesn't know. She'll say yes or no to a direct question. Her head is in this kind of perpetual motion. It's not like a tick though, it is the movement of discomfort and confusion.

Her poor body has been through so much in her life and I hate watching her struggle hour and hour like this, in the hospital she hates. We're already at the point where they can't really do a whole lot for her and she is failing to make improvements with the limited options they have. I'm failing to understand why she can't just be discharged today into a hospice program and we can get about the business of making her comfortable. The ICU docs are reluctant to give her anything for the anxiety and such because it can have a sedative effect. They're concerned if that happens she may have an even tougher time with her oxygen levels.

Meanwhile I'm sitting there, constantly trying to keep her calm and as comfortable as possible with pillows, blankets and water. But I can't help her and she keeps asking me to help her (though she doesn't know what she needs). Last night, it got to be too much and I started having an intern panic attack. My insides felt all twisty, my nausea kicked up, my stomach felt raw and painful and I couldn't seem to take anything but shallow chest breathes. I was able to take an Ativan and my Bachlofen when I got home which helped me calm down and get some sleep, but I just kept thinking that my grandma is really the one who needs this stuff.

I guess we're going to be working on deciding what hospice to go to and trying to get her transitioned from here to there today. Hopefully.

Okay, well I need to pull myself together here and get back to the hospital. Thank you for all your well wishes and support. If you are so inclined I know we could all use some prayers right now.

Back in the Hospital

Sorry it has been a while since my last post. My grandma is back in the hospital...they thought she had developed pneumonia but it turns out she has fibrosis in both her lungs, which is basically scarring that prevents the lungs from taking in enough oxygen. When the lungs don't take in enough oxygen the heart has to work extra hard. There is nothing that can be done about the fibrosis and the docs say she will continue to get these infections and struggle to get enough oxygen.

She really hates being in the hospital but seems to be spending more and more time there. We sat down with her and the doc yesterday to talk about what her wishes are moving forward. She has agreed to aggressive treatment during this hospital visit with the goal of getting her strong enough to be released from the hospital but this will be her last hospital stay. After this they will provide her with oxygen and breathing treatments but mostly it will be about keeping her comfortable.

I'm just glad we were able to have this conversation with her and that she could make the decisions. No matter what her choices we all just want to support her and love her through this. And that means more time at the hospital and more pushing my body to keep up.

Migraine Blog Carnival

Great news: The new headache/migraine blog carnival is up. This month we were to send in our favorite post from the previous month. There are lots of great posts and you can check it out here.

Clouds For Me

The heat is finally breaking a bit. Yesterday morning wasn't so bad and now this morning the clouds have rolled in and the humidity is down - even though it's still pretty warm, it feels much better by comparison. My arms, legs and head are all giving me trouble but I'm very motivated by this descent weather to go out and get stuff done.

I'm going to run a couple errands that I had to run anyway, and then I'm going to finally clean out my car. My car looks terrible right now as it hasn't been cleaned since I left Virginia two months ago. It has just been way too hot. The resulting garbage, dog hair and dash dulling from the sun have been driving me nuts. What a relief it will be to have that cleaned.

I've said it before and I'll say it again, I love a cloudy day. The more the merrier.

Looking Back

I'm starting to get caught up with things at home after the long weekend. Part of that was adding up my migraines and the number of rescue meds that I took. The numbers say that July was worse than I thought. I had 22 migraines and took 10 (1 more than I should have) rescue meds. This wasn't my fault and I'm not going to feel bad about it. My docs put me in a bad position with the Bachlofen, it has been crazy hot and humid and I spent a good 2 weeks at the hosptial everyday with my grandma so I did what I had to in order to make it through.

Most disappointing was the apparent weight loss that I had. It isn't much, but then again I'm so skinny any loss is more than I can afford. It has been enough of a weight loss to cause me to get a head rush every time I get up. Sometimes I even lose my sight for a bit. This constant head rush sensation translates into more migraine pain. I'm waking up feeling okay (thank you Bachlofen) but the more sitting and standing I do as the day goes on the worse my head feels...

I've been on the Protriptyline for more than a month now and I'm sad to see that I'm not having the same benefits I saw when I was on the Amitriptyline, the munchies (weight gain) and the improved outlook and mood. To make things worse, I am still having the same negative side effects that I had with Amitriptyline: super dry mouth and worsening brain fog. Come Sept I'll try Botox but I guess I'll just need to tough it out until then.

I"M SO SICK OF DEALING WITH THIS CRAP ALREADY!!!

Turning 33

I haven't been able to post since Friday. A whole bunch of family (12 people in all) came to town for a long weekend to see my grandma after her hospitalization. I absolutely love it when a bunch of us get together. They are such a fun bunch that I just couldn't resist overdoing it. I think my body must produce some sort of positive chemicals when I'm having that much fun because I feel like I can manage more than usual.

Even though I was completely exhausted by the end of Friday, somehow I managed to continue showing up for festivities right through Monday afternoon when everyone left to go back home. We ate, we talked, we laughed, we played games and took turns going to the nursing home in small groups to visit with grandma. We don't often get together like this but we all wish we did it more. Seems like it takes a wedding or a funeral to pull us all into one place.

The previous week was really tough pain and energy wise, perhaps the pain monster decided to give me a break for the weekend with my family as a kind of reward or early birthday present. I did have one migraine but was able to treat it with my rescue med, take a nap and keep going. Then as soon as I was back home yesterday afternoon a nasty migraine took hold and just refused to budge.
_____________

Today is my 33rd birthday and the hottest day of the week. That means I am just going to hide indoors until it's time for dinner. I told my husband I don't care what we did tonight, but I'm not making dinner so we'll probably go out. Or maybe I can convince him to go get take-out so I don't have to go out in this awful heat. This is the 3rd straight week of daily excessive heat warnings and today is no exception. It's gone on so long I'm starting to feel sick to my stomach and kinda dizzy as a result.

Can't wait for fall.