A Tough Move Ahead

Here we go.

Summer is in full swing in northern Virginia with temperatures in the mid 90s and a heat index over 100. Between the extreme heat and humidity, the poor air quality alerts and out of control pollen level it has become near impossible to enjoy time outdoors, or anything that requires you to leave the house.

I say sarcastically, Just in time because my husband finally got the offer letter from the job in St Louis. FINALLY! This is a pretty miserable time of year to be moving, but at least we're finally moving.

We've decided that I'm going to go ahead and keep my appt at Mayo on the 8th and then go down to St Louis from there a couple days ahead of my husband, dog and all our stuff to start looking at apartments.

Relocating across the country is complicated and stressful enough all by itself. Trying to coordinate such a move when we're both in different states, far away from the state we are moving to is going to be a real bear to say to the least. For mere survival I will have to let go of many worries. My husband is simply not as careful as I am with packing. He is an arc typical male who has a different definition of clean than I do. There are lots of little things that I worry he won't be able to keep in his head because it won't seem important to him, like the broken wheel on the bottom drawer of our dresser drawer mechanism. If he doesn't notice it, it will likely be lost. I will have to just let go of these worries if I'm going to keep my sanity.

I'll be leaving in less than a week so there is a ton of stuff to do between now and then and my husband will just have to make time to take care of the rest of it. His parents have offered to come and help us with the actual moving, and I bet when they find out I won't be here for the tail end of it they will come a bit early and help him get things together here. That will relieve some of my stress.

It sort of feels like we're doing this the hardest way possible but if I don't take this appt on the 8th my doc can't see me until mid October. I just can't wait that long.

So, here we go...

Sex & Chronic Pain

Living with chronic pain has effect every aspect of my life and my sex life is no exception. You likely know exactly what I mean. It is more difficult to find times that work for both of us. Being "in the mood" is hard to even think about sometimes, let alone actually work up to.

I'm lucky to have married a man who knows that marriage is about many things and sex is just one of them. At the same time, it is important enough to both of us that we found a way to make it work.

One important thing I learned along the way is that it wasn't just my problem. Of course, I have the most to deal with and overcome as the person living with chronic pain. But when we sat and talked I learned that my husband was dealing with stuff too. He didn't want to hurt me, or push me if he thought I was having anything other than a good day (and those are very infrequent). The stress of being a one income household, and my husband working long hours and dealing with traffic every day also put stress on him.

We've had to do what most married couples have to do when life starts to edge out sex and intimacy, we made a plan to find more time and work it into our specific challenges.

For me that includes stuff like, redefining being in the mood, planning ahead to be physically prepared before and after just like I do when planning a day out, and finding ways to still be intimate even when regular sex isn't something my body will allow for.

The biggest and best step in the right direction for us was just figuring out how to communicate effectively about all the pain, stress and such that surrounds us. Once that happened it was easy to figure out how to meet our needs within the reality of our life.

Vicious Cycle

Ug!

Okay, let me start off on a more positive note. I sure am glad I gained all that weight early in the year when I was on the Amitriptyline. The extra buffer is coming in handy right now as I struggle to eat.

I'm so nauseous and hungry but nothing sounds good and when I do eat I can't eat much before I feel like I just can't eat any more. But I'm still hungry. But nothing sounds good...it has become a vicious cycle.

I've been on this Rx acid reducer for more than 3 weeks and it hasn't helped at all. I'm actually feeling worse now. Hopefully I'll have the results from my stomach biopsies by Tuesday and maybe that will reveal a better course of action.

Searching for Help

Blogger seems to be having trouble again. I haven't been able to post comments on several other blogs I follow and now I can't even post comments on my own blog either. Very irritating!

ANYWAY,

Time continues to tick away and now it has been 2 1/2 weeks since we last heard from the people who offered my husband the job in St. Louis. Basically all they need to do is clarify some details and it has taken them this long...and counting. Not Cool! My husband sent them an email yesterday but didn't hear back. I'm quickly losing hope here. We could have been moving this week if they had their act together.

I've decided that I can't just continue to wait to get treatment. Not only do I need to continue forward movement on treatment but I'm also running out of a couple of my refills soon. I would never have imagined it could take this long so it is hard to imagine just how long it will continue to go on. The easiest thing to do would be to go back to my old neuro. I really do like her and all but it is clear she isn't equipped to treat someone like me so I've decided I need to seek out a headache person in the area.

My first choice was Johns Hopkins Headache Clinic as it is only about 1 1/2 away without traffic. I called but their first available appointment isn't until September - SEPTEMBER! I went ahead and made the appointment just in case but clearly I need to find someone else until then. The search continues...I may end up back with my old neuro after all.

I'm frustrated.

Unexpected Anger

Sometimes it sucks to be a woman. Our anatomy is more complicated, we have to subject ourselves to regular invasive GYN exams, our hormones are always fluctuating, we have hair and skin care needs that require much more time and expense than men, there are all kinds of cruelties in fashion...the list goes on and on.

But women can do something so incredible that men can't. We can grow people in our complicated female parts. I've always had really horrible periods and I used to find some measure of comfort in the fact that someday I would be rewarded for all the trouble with the miracle of carrying my own child(ren).

Now that I know I won't be able to have children I've developed some real anger over the many hassles of womanhood. This anger has taken me by surprise. I'm still coping with the sadness and loss of opportunities that one expects to encounter when dealing with infertility but I didn't anticipate this intense negativity towards my reproductive organs. Maybe I wouldn't be feeling this way if my cycles weren't so darn ugly.

It just feels so wrong to have to deal with the intense cramps, severe mood swings, back pain and migraines that won't respond to rescue meds when my organs can't perform their actual function. It's wrong that endometreosis has so ravaged my insides, destroyed one of my ovaries and continues to attack me even though I can't have kids. I'm worried about my remaining ovary being destroyed as my other one was. My GYN doc has basically given up on me because my medical situation is complicated and I don't want to start in with a new doc until we move - if only we knew when that was!!!

*sigh*

I hate feeling this way.

Oh Sweet Potato

There is a small sweet potato that has been on our counter for several weeks now. I bought 3 sweet potatoes one day at the store and we ate 2 right away and then the 3rd has just sat there. Neither my husband or I have wanted to turn the oven on just for the one small potato so it has sat there and sat there. I've tried purchasing just 1 more at the store and then we'll want to split a potato instead of making 2. So it continues to sit there.

About a week ago it sprout some red stalks and they have actually gotten fairly large since then. At this point I think the potato is still edible but I've become completely fascinated by the stalks so I don't want to eat it. I just want to see what happens. How much will it grow just sitting there on the counter?

Come to think about it I don't even know much about how sweet potatoes grow. I know they grow underground like potatoes and carrots. Do they start as seeds or do you just plant potatoes to make more potatoes? Perhaps I should go online and try to find out more about the growth of sweet potatoes. After all they are grand. Then someday when we have moved someplace where we have some outdoor access I can grow my own. Yum!

Childhood Relics

Have I ever mentioned how much I love Netflix? I do. Recently I added The Cosby Show and Family Ties to my Instant Queue. I've been having a great time watching these old sitcoms that I grew up watching.

They aren't as funny as they were at the time but somehow I'm enjoying them just as much. I think it is their familiarity. There is something comforting about the sounds and sights of them as if I could feel the security, comfort and love of my home and family when I used to watch them growing up. Back in the day when I knew nothing of chronic pain. I had no idea about the harshness of the world outside ours. I was certain that my life would be as great and successful as that of my mom's.

These relics of my childhood are such a pleasure to have at my fingertips. Helping me to feel some of that security and comfort for the 21 or so minutes of each episode. What a treat in this time of stress, uncertainty, pain and sadness.

Thankful on Friday

I'm feeling like I need some perspective today so I'm going to make a list of the things I'm thankful for.

1. I'm thankful I don't live in one of the areas that has been devastated by tornadoes and flooding this spring.

2. I'm thankful my husband is employed and that we can pay our bills.

3. I'm thankful for my morning shower, which almost always leaves me feeling refreshed.

4. I'm thankful that bananas are so healthy, cheap and non-acidic.

5. Mostly I'm thankful for all the patience, love and humor from my husband. I can't imagine going through this without him and I don't know that I'll ever be able to express just how much he means to me.

What To Do?

I had my endoscopy yesterday afternoon. She didn't find any ulcers, thankfully, but did observe inflammation in my esophagus, stomach and small intestines. She took biopsies of all of them and I'm to call in a couple week to inquire about my results.

I have more problems with how this all went down than I want to even get into.

Ultimately, we still don't know what is going on. I sure hope the biopsies will provide some answers so that I can get to feeling better.

One thing is clear, I am an anxious person. Even though the procedure is common, and unlikely to create problems I've managed to worry about it extensively. I've been worried that I'm bleeding from the biopsies. I've been worried that they have punctured a hole somewhere along the line and food, water and bile is leaking into the stomach's cavity. I'm worried about my insurance deciding not to cover it. I'm worried about the problem persisting. The list does go on, but you get the idea.

My husband got an offer for that job in St. Louis on May 2nd. The pay wasn't good but the company is offering to pay our moving expenses. He started negotiating with them but his contact needed to check on some details with the corporate office and get back to him. That was on the 5th. Today is the 18th and except for an email apologizing for the slow response more than a week ago they still haven't gotten back to him. We went ahead and put in our notice, right away at the apartment complex as no matter what they counter we will be accepting and moving back. Because of this I canceled my appointment with my neuro here and was able to set something up with Dr Garza at Mayo. But now that appt is less than 3 weeks away and I will have to push it back. But the thing is, I really need to see him. Things have been changing and I need help.

I'm so stressed and frustrated that it is taking so long for these folks to get back to us. We're again in this torturous limbo. And it is not torturous because we have to wait, but because I have real issues that need to be addressed and the longer this goes on the longer I have to wait. What is going on with them that it takes this kind of time to work out the very small details that they are working on. Basically all they had to do was find out exactly what the policies are and communicate them to us. The negotiations are basically over, this is clarifying details only.

I'm tempted to keep my appt at Mayo and let my husband deal with the move if it comes to that. His parents are going to come out and help and we plan to hire some moving men to just load the truck as we are 3 stories up, I'm not much help and his parents are not young. They don't need me to help supervise the cross country caravan. Then I can drive down to St Louis once they arrive and help look for an apartment.

Between the frustration of this continued limbo and the blues and anxiety I'm feeling anyway I am having trouble mustering up much excitement about the move. No doubt I'm thrilled to be leaving northern Virginia and to be moving back to the midwest. I can't wait to be under the care of competent doctors and institutions. Being able to see family and friends more often is going to be really good for me. But I hear the lack of enthusiasm in my voice when I talk about it.

What to do?

Me vs The Blahs part 2

My battle with the blahs has intensified. I think my pesky hormones have galvanized them giving them a leg up. Whatever the reason, I feel like they are winning right now. I've had enough experience in life to know that in the end I will win the war. Nevertheless, somehow I am not finding much comfort in this knowledge.

I'm super uncomfortable. Nothing sounds good. I'm unreasonably fatigued. My sense of humor is not keen. I'm overwhelmed by the stresses in my life and my health situation. I don't know if some of these symptoms are the early signs of a new illness or if my mental health has taken a hit and I just need some antidepressants.

At first I thought the blues were the result of coming off the Amitriptyline. But that was a month ago, shouldn't I have snapped back to normal by now if that was the case? I don't know what's going on. I'm spending a ridiculous amount of time just working on the will to plug ahead. I'm still managing to shower in the morning and I'm getting some stuff done around the house. Cooking and dishes have taken a severe hit as has my appetite.

I'm just not sure what I can do to get on the other side of this feeling. I'm going through the process right now of exploring the recent changes in my health and it's possible this is related. But I wish there was a way to treat these symptoms in the meantime. This just isn't good.

Endoscopy or Not

Okay, so I logged on this afternoon only to find that the two posts I made yesterday are gone. What the heck! Where could they have gone?

I know I couldn't have imagined making the post, after all I had a couple comments on one of them.

Have any of you had this happen to you?


Anyway, I just read through all the information on Mayo's site about ulcers. It sounds like ulcers can be caused by a bacteria or by pain medication. I think it is pretty clear that the very large amount of Ibuprofen, Ketoprofen and Imitrex that I've taken over the years is the obvious culprit. Mayo outlined 3 paths to diagnosis. First, the bacteria can be detected in a breath or blood test. Second, ulcers can be seen in an x-ray with barium swallow. Third, an upper endoscopy can be done. If that is done, and an ulcer is found they can take a biopsy and test if for the bacteria.

Based on this information I have to believe the xray is the best option for me. I'm not worried about a bacteria and even if it is the bacteria we can figure that out easier and cheaper by doing a breath or blood test. I would rather do those things than the endoscopy, which will require an excessive amount of fasting, anesthesia, and will require me to fight crazy DC traffic afterwards. I don't want to put my body through that unnecessarily. Aren't I going through enough already?

I'm calling my doc now to request the change.

Headache Blog Carnival

I'm a little behind in posting this due to the worst getaway I just returned home from:

The new Headache Blog Carnival is now available. This month's topic is Getting Out of a Self Care Rut.

Friday Fun

Ally McBeal recently became available on Netflix streaming instantly so I've been tuning in waiting for my favorite episodes: those with Robert Downey Jr. I absolutely love Robert Downey Jr. He is a great actor and a super hottie; I enjoy watching him in anything, even if the show/movie wasn't interesting. He really becomes his characters and commands all your attention. I know women usually get all crazy over actors like Brad Pitt or George Clooney but I'd take Robert Downey Jr over any of them, any day. I think his talent has been underrated through his entire career. I'm so glad he has overcome his substance abuse issues and is making films again. Maybe the role of a lifetime is just around the corner and he will begin getting the kind of acclaim he should.

A Bit On Self-Care

Living the life of a migrainista, it is easy to get either in a rut or out of practice in the art of self-care. I'm in one now after what has been a tough month of problem medications and the intrusion of additional health issues. During the worst of the bad days, it seems impossible to exercise, do much food prep, relaxation and such. But having been on this down slope before I know I can find my way back and regain some balance.

Some of regaining this balance is a little out of my control like when I had that reaction to Neurontin and there was nothing I could do but hang on until I could titrate down. If anyone has figured out how to maintain any level of self-care through these toughest derailments I would love to hear all about it - really.

These derailments aside, sometimes it feels like the self-care I'm doing is no longer really providing the balance and relief that should come from good self-care. Mostly I chalk it up to my need for variety. But it can be so difficult to seek out and add this variety, or even adjusting these techniques to address new stresses and/or ailments.

I try to set aside some time each month to work on different areas of self-care. For example I spend a couple days each month looking for new healthy recipes to try so I can continue to eat healthy without getting sick of my foods. I like to spend some time looking at YouTube videos for new exercise ideas. Then I can try different things until I find what will work for me and my pain situations. I've only recently begun meditating, well trying to meditate. I won't really be able to get in a rut until I actually get the hang of it.

Perhaps the toughest area of self-care since I started living with chronic pain has been in caring for my creative side. This is not because I haven't put in the time and effort, but rather because my creative side has gone into hiding. I simply can't find it to feed and nourish it. I used to draw and paint and do theatre. The arts were very much a part of who I was. The migraines seems to have rendered that part of me unconscious.

As I think about it right now I wonder if what really happened is that all of my creative energy has been focused on migraine management and altering my environment to accommodate my chronic pain. Of course, the question then becomes, how does one nourish and feed that kind of creativity? I wouldn't even know where to begin. Maybe the fact that I need to use it so frequently at least keeps it in good shape. Either way, I haven't been able to get the creative artist in me out of a rut for more than 5 years.

Uffda!

Uffda, yesterday was a tough one. I had an unusually bad migraine that no amount of medication was able to help with. The whole day was a throw away.

Today I'm feeling a bit more normal and am even getting a couple things done. I went back to the GI doc this morning for a follow up and none too soon as I've just been feeling so awful lately. My CT scan showed that things are mostly normal and okay outside of what she described as a very small kidney stone. The worsening symptoms lead her to believe that I may have an ulcer or inflammation in my system, which would make sense as I have been taking a great deal of Ibuprofen and Imitrex over the years. She's prescribed an acid reducer and will do an endoscopy in 2 weeks to see what's going on.

I'm trying to get caught up reading blog posts and such but am quite tired after just 20 minutes. It might take me a another day to get through it all but I guess there is no hurry.

How are all of you doing this week?

Ghosts Anyone?

My husband and I have made plans to go up to Gettysburg for a couple nights next week. His job is pretty frustrating and so he wants to get away from the city and just have some fun. We picked Gettysburg because it is fairly close to home and there is lots of outdoor free stuff to do that we can bring our dog along for as well. We like to take her with us when we go places but there are not many getaways that work with a dog her size.

At first I thought it would be really fun to go and stay at a bread and breakfast but found that they don't really welcome dogs. I did end up happening upon a B&B that does but then I got to thinking about it. With the anxiety issues our dog has I don't know if any of us will really be able to relax there and, as you can imagine, I will really need to relax when we are not out and about exploring. We ended up finding a reasonable hotel that would accept dogs and made reservations there.

Then it occurred to me that it really is for the best that we ended up in a regular, non-historic hotel as there is much talk about Gettysburg being haunted. Most of the historic hotels and B&Bs like to promote ghost stories from their locations and the town certainly has many ghost tour companies. I tend to believe that ghosts exists and think I would struggle to relax anyplace that might be haunted. Certainly, stories doesn't mean there are ghosts but on the off chance they are in one of these places and they could show up, well that's enough to make me glad we will be staying in a hotel.

Do you believe in ghosts? Have you ever seen one? Would you want to stay someplace haunted?

Me vs. The Blahs

Well, it's official, the blahs have permeated all aspects of my days. There really isn't anything that I want to do except curl up in bed and sleep - until better days return. I'm fighting it, with whatever is in me. I keep getting up, and showering and I can rally when my husband wants to do something. But I can't answer the question, "what do you want to do?" The answer is nothing. Fortunately I can enjoy myself when I'm actually out doing something.

I guess the loss of motivation and interest is most pervasive. I'm not enjoying food, I don't feel well, nothing sounds good, blah. I'm scheduled with my local neuro on Wednesday and I'm seriously thinking that I'll ask to try Botox. Though I do have a few remaining questions. My recent struggles with medication side effects have me wondering if it is possible that I could have a bad reaction to the Botox. Once it is injected, there is no way to stop it so if there is a reaction I will simply have to wait until it has run it's course.

Blahs, I'm not giving into your very compelling persuasions quite yet. Even if it means I have to go back on the Amitriptyline.