Thoughts...

I hate that my chronic illnesses make my life so self-centered. So much of my energy goes into how I feel and what I need to do to get better. I wish I could spend more of my time and energy on the people I love and how they feel and what they care about. I wish I could be a better person for them. One day, I will.

That leads to another problem. "One day..." I never live in the "now". I spend my whole life trying to make myself better...looking forward to better days...to times when it won't be so hard. I keep waiting for the time when all of this will be over with! When no one will want to cut my head open. When I can be more functional, more useful, less despondent. Even with my relationship, I'm just waiting for the time when grad school will be over, and I'll be able to spend more time with Gus. How can I learn to be satisfied with what I have right now? Especially, when right now is often so miserable, such a struggle, and filled with so much pain?

Always a work in progress...

Getting harder

Life is so hard sometimes. Lately, I've had to use my wheelchair more and more. I'm having a lot of trouble catching my breath. Most days, just sitting up is enough to make me feeling like I've been doing jumping jacks for hours. Also, the last 2 days, I've developed a horrible headache that can't be relieved. The only thing that helps is traction, sometimes. The only problem is that my inflatable traction also seems to block off the flow of CSF through my craniectomy region since it inflates all the way around. I know I'm supposed to have a Pronex traction, but we couldn't afford it. ($800). It might provide more relief, though.

Also, I got my DEXA scan results back. These are still considered preliminary results, since the scan was done within the first month of treatment. This scan found that I have moderate osteopenia, with T-scores of -1.8 and -1.3. So, I just have to hope that by my next DEXA, I can show significant improvement. Eating food would probably help with that. I've heard that protein can be helpful, in addition to vitamin D and calcium. So, I'll try to increase my protein, since I don't get much right now.

That's where I'm at right now. Headaches, fatigue, and trying to catch my breath all day.

A Missed Day

I couldn't work today. I couldn't catch my breath and my heart was racing whenever I was upright. The headache, nausea, and knee pain were bad, too. So even though I really need the work, I wasn't able to drive to the different houses for lessons, so I had to stay home. Really, my whole body was rebelling. It just did not want to be upright. So, that sucks. I don't know how I can maintain this schedule. I can only hope that next Tuesday is better. I don't want to lose those students!

So, another complication is that I'm home alone tonight. My plan to avoid a psychological meltdown is distraction. I just finished watching Juno, which is a really fun movie. Now, prime time shows are on, so I'm sure I'll find something. If only Subway delivered, then I could eat dinner! But I'm fine. There are snacks here. I just can't stand around very long getting them.

So, it's a rough night, but could be worse.

Catching up

Okay. So, I finally got a wireless connection set up here at my mom's house. Since I'm here 5 days a week, it seems like something I should have, so I can use my laptop. So finally, here I am on my laptop at mom's house.

Here's some correspondence between June and me, which explains where I'm at:

Hi June,

I just wanted to write to you about a couple of things. For one, I wanted to be sure that my doctor's office has faxed blood test results over to you, including my Potassium levels.

Also, I wanted you to know that I've had a definite downturn in my symptoms of instability this week. I haven't been able to work or drive. I've woken up during the night with horrible instability headaches. But mostly, it's my POTS symptoms during the day. I have been so short of breath that I can't even speak a sentence without catching my breath. My heart has been pounding. I've been very dizzy, and restricted mostly to bed. I can't afford to quit my job right now, so I will just keep struggling through. I just wanted you to know where I'm at. The traction helps to some extent. But mostly I need to stay in a horizontal position to keep symptoms at bay.

Basically, I can't wait for my re-fusion surgery. I'm taking my 50,000 units of Vitamin D and extra doses of calcium, so hopefully my bone density will be improved enough by this summer to operate. Is there a certain bone density the doctors are looking for before they do the surgery? I had one DEXA scan done last month, and my next one will be scheduled for late April or early May. I just pray that my bones are strong enough by then to re-operate, because my level of functioning is decreasing again. Thanks so much for your continued support.

Carolyn Richardson
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Hi Carolyn,
I have not received recent blood works. The older ones were normal, if I remember correctly.
Fax me the last DEXA. There is no specific number that the doctors are looking for but if there is improvement after a few months of treatment and if the specific bone is strong enough, they might go ahead with the fusion with more treatment after the surgery.
So send me the last result and I'll forward it to Dr. B for his response.

Take care,
June
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So that's great news. I just need to go about getting these test results over to June. I called Loyola, and after much negotiation, they decided they could fax me the test results (But seriously, who has a fax machine???). And clearly, the blood test results I called to get faxed over never did get sent. Great. How come nothing gets done unless you do it yourself? And then why do we always have to use a freaking fax machine?!!!!

Oh well. I have to go to the psychiatrist now. I'll write later, if I survive the day.
___________________________________________

Okay....So it's later. I just wanted to add that while I know that I need this huge reconstructive surgery inside my skull and spine, I am scared to death to have it done. To go through that torture again seems like the worst idea I've ever heard of. If it weren't for the promise of that sweet spot and the debilitating and progressive nature of symptoms, I wouldn't consider it. I mean, it is a crazy operation. It's the craziest thing you could ever imagine. This surgery is absolutely nuts. You'd have to be insane to go back and have the surgery redone. Especially when some people having this surgery don't seem to be getting better...or they get better and then worse again (isn't that always the way?). However, I have felt in invasive traction what my body can feel like. Then when they took the weights off, it felt like the weight of the world was crushing me and the feeling of sickness returned to my whole body. So, I know that if this surgery is done exactly right, and they find the sweet spot for my skull, then I will have that light, feeling of relief for all time.

Therefore, I will do anything to get that feeling back. Even have the most insanely ridiculous invasive surgery one can ever have done. Whatever it takes to get my life back. How could I not take that chance, knowing that my quality of life and level of disability for the rest of my life depends on it?

Choices

I recently discontinued my gym membership at Bally's, since I haven't used it since surgery...That got me thinking.

I know that getting "in shape" again should improve some of my symptoms...most likely the joint pain, if it's the right kind of exercise. Remember that before my spinal surgery last June, I was in top condition, considering my POTS symptoms. My muscles were strong and I felt powerful. My health was better back then, making all of that exercise possible. The problem is: now, each day, I only get one choice of what to do. And four days of the week, Monday through Thursday, the thing that I choose is work. There's no other option, because that income is needed. Gus and I couldn't live without it. So, if I choose to begin some kind of physical therapy or aquatic therapy, I could only participate in it on Fridays. And what I really need is a daily regimen. Unfortunately, when I get home from work each day, I am completely done. I collapse. And don't even talk to me in the a.m. hours. Seriously.

So, when I go back to Ohio to see Dr. Grubb's nurse, and she recommends aquatic therapy 3 days a week, I will wonder which 3 days she could be talking about.

I've just been through all of this before. And unfortunately, my lifestyle now doesn't allow for me to get "back in shape", even though I'd really love to fit into my jeans more comfortably. On days that I don't work, I can rest most of the day, and then do some kind of exercise in the evening hours...if it's a good day and I've made no other work or social commitments that day. The problem is...the days run out. You have to do errands, groceries, laundry, cleaning (ha!), cooking. Gus does most of it, I admit. But life is still very taxing.

I just am running out of energy lately, and it doesn't seem to be my choice on what I expend that energy. The days seem to just happen, and I get more and more out of shape.

So, that's a hard issue to face, because I've dealt with it before, and I just don't have a solution at this time. I'm convinced that exercise 1)Changes my POTS symptoms a little 2)Would help my EDS a bit 3)would help my self esteem a ton.


So, we'll have to see if I can work something out with a new physical therapist. The group I went to for spinal surgery recovery is good, but they didn't know how to adapt to my POTS at all. So, I could go back to the wellness center. But they have a warm-water pool, which is dangerous for people with heat-induced fatigue and hypotension. It's not safe to let me be too warm. So, maybe the wellness center, but no water therapy. We'll have to see. I just know this issue will come up again, because it's Dr. Grubb's favorite treatment.

So tired...

Break was wonderful. Our trip to Minnesota to visit friends was great. Returning to work was nearly impossible. This week was really hard. I've been so tired and in so much pain. I'm having a lot of trouble driving and moving around. I've also had rough time emotionally coping with the responsibility. It can be really hard sometimes. I may have to reconsider my schedule some more, so that I won't have to do as much driving. I'm not sure how to do that, but I'll just take it as it comes.

I'm so tired all the time now. If I don't appear tired, I'm either faking it or on pain meds...probably both. I know I haven't written much, but everything's been really tiring lately.

Medically, I have an appointment with Dr. Grubb's nurse in Ohio on February 2nd. Also, I had a DEXA scan to check on my bone density, but even with the vitamin D and calcium supplements, I don't expect it to be better yet.

Actually, none of my bone or joint or muscle pain has improved at all. It's clearly gotten worse. I would love to find an Ehlers-Danlos doctor to help with that.

In the long term plan, I don't know when I'll be eligible for re-fusion surgery. That's just a waiting process, nothing I can plan for yet.

In addition, I had an emotional breakdown this week, and pretty much lost it. I feel like it could happen again at any time. This is just not manageable right now.

Of course, my mom, dad, Rob, and Gus have all been so supportive and helpful this week. I'm glad I don't have to do this alone. Because right now, every time I'm alone, I break into tears again...not just nice little tears like in the movies...but horrible, ugly, loud, sobbing tears.

Okay, I'm done for now, and in tons of pain, as always.

Challenges for the holidays

Well, things have been getting worse. I guess that's the only way to put it. I've just definitely been feeling worse and worse and able to function less and less. I'm needing to spend a good part of my morning and afternoon in bed on an average day. That's made shopping and enjoying my break so hard, because I feel so awful all the time, and I haven't been able to get out to do anything. So I apologize in advance for the gifts this year. I guess I couldn't afford much of anything anyhow. So, poor Gus has been doing all of the cooking and dishes and errands while I rest and try to keep surviving. But at times, my resolve has gotten weaker. I've definitely begun to wonder how I will continue working in the state I'm in. Frankly, I don't think it's a very good idea. My body is screaming out for more and more rest. When I take pills to avoid that rest, it only feels worse later. It's just so miserable. It feels a lot like before my first fusion, as things were getting worse. I'm suffering from instability symptoms almost constantly. At this rate, it won't be long before I can't drive, can't work, can't function. I would lose everything. I'm so scared. I'm not being negative. This is not pessimistic thinking. I'm just facing facts. I've been through this before. I know where this leads.

I hope this next surgery really lasts. What if my stupid connective tissue just keeps sagging out of whatever position it is set in? I just need it to be soon, before I lose everything. People are counting on me. I can't stand to let everyone down...again.