The Little Things

The old saying says "don't sweat the little things". Well, I unfortunately don't have that choice. The littlest thing can bring everything crashing down.

I have had an absolutely miserable week, to the point that I couldn't even talk about it. All I could think or do was swear and try to keep myself from getting completely suicidal. I am hoping - knock on wood - that I am finally pulling out of it.

It started with one small thing: My second shot of Xolair, the new medication we are trying to control the chronic hives and other inflammation - was delayed a week because of the July Fourth holiday. The Xolair was definitely working; there was drastic improvement. But that fifth week brought the hives and the GI tract inflammation back in full force. With it, of course, came all the anxiety and hallucinations and everything else that comes with my being miserable and not able to eat or sleep well.

And then came the second little thing: I was so exhausted that I slept until almost 1 p.m. a couple of days after getting the injections. This meant that my midday medications, which are taken at different times depending on when I get out of bed and take my morning meds, would be taken at the same time as my afternoon anxiety medications, which are always taken at the same time. Well, you can guess what happened - I took the anxiety meds but not the others. Since my midday meds include Tylenol and Tramadol, this meant that by bedtime I was in major amounts of pain and couldn't figure out why. My nighttime meds, which also have Tylenol and Tramadol, hardly made a dent in the pain and the stress on my body had me vomiting and breaking out in major hives. I had to take extra Tramadol at about 2 a.m. - something I try to avoid at all cost - and I hardly slept, just dozed on and off. This made the next day even worse because I was beyond exhausted and any attempt at taking a nap was interrupted by major itching, muscle spasms, or vomiting.

Well, I'll just say that it has taken days for things to finally get almost manageable. I am still waiting for the Xolair to get back into my system enough to take the hives down again. They are waning, but I still smell like a mix of Benedryl cream and hydrocortisone lotion. The pain is down enough that I can at least function and the depression is manageable again. I even convinced myself to get the paints out today and I worked on a project I've been wanting to get done.

But the takeaway from this is that my life is just miserable. I hate saying that, let alone putting it in words, but it really is. My physical and mental illnesses work together to keep me from getting anywhere. More old saying: Nothing lasts forever, things will get better, etc. Bullshit. When you have a chronic illness or a mix of chronic illnesses, things really do last forever. Yes, they can try to stabilize things, but it just takes a little thing to throw all the progress in the trash. I am right back to screaming at the heavens and asking why the fuck I was given all of this. It is really hard to not be suicidal when you just can't see an end to the pain, the confusion, the stress, the paranoia, the depression, the anxiety ... the whole fucking mess.

I am holding on. It helps to paint again, to put that color on a canvas and make them swirl and dance together. I have a painting on my computer desktop that a friend - I don't remember who - posted on Facebook. It says "I'm going to make everything around me more beautiful - that will be my life." I am clinging to that. I am looking at a streak of green paint on my wrist that somehow escaped the hand washing and it almost makes me smile. And that almost is better than nothing.

Finding The Patterns

If you have been following me or have known me for a while, you will know that one of my "things" is that I have to be in control. I learned through years of therapy that this is my response to the combination of my mind being so chaotic and my schizophrenia trying to find a patter to all of it. I keep thinking that if I could just get enough data, I can make it all fall into place and work like it's supposed to.

Of course, that never happens. I have literally sat on the floor sobbing that there isn't enough data, I don't have enough data points to make the pattern readable. And that is just the mental side of things. Then there are my autoimmune diseases and other physical ailments that complicate it and make it necessary to get even MORE data to make it all fall into place.

To some extent I have succeeded. By reading research papers and journals and talking to various doctors, I have learned that a lot of my ailments are connected. My mental illness and my chronic nerve and muscle pain (often called fibromyalgia) are connected because they are all disruptions in the proper function of my central nervous system. And they are now finding autoimmune connections to this type of dysfunction. I KNEW there was a link. What I could see of the pattern hinted at it. Now I just wish someone could find a way to fix it. That research, unfortunately, is decades away from having a practical application.

Today I found another connection. I had my follow-up appointment with the immunologist and all I had to report was that increasing the dosage on the Loratadine had done nothing to improve the chronic hives. I am still completely miserable and am having trouble sleeping because of the itching and pain. I have also been completely nauseated and have had trouble keeping my meds down after taking them in the evening. I happened to mention it, and the doctor confirmed what I suspected: When I have that type of autoimmune inflammation on my skin, it is also happening throughout the GI tract. So, when the hives flare up, I get nauseated and have GI trouble and YES they are connected.

With that in mind, he decided to forgo what was going to be step 2 to controlling the hives and we are going to step 3. If we can get Medicare's approval (and he said it usually isn't a problem) we are going with Xolair, a monthly injection designed specifically to control hives or asthma that don't respond to typical medication. I don't know how long it will take to get the approval, but I hope it is soon. I am going nucking futs with the hives and nausea.

In the meantime, I am feeling completely out of control. Yes, we have some answers and a plan, but I am still trying to find a pattern. Maybe the hives would go away if I stopped eating this or that. Did they get worse when I went to bed later than usual? Could it be the heat? Is that causing the flare-up? There has to be something I'm missing, something that I can control that will fix this. This isn't the case, of course. I am already on a very restricted diet (and wouldn't that be wonderful if this new medication fixed some of my GI issues and I could relax the regimen a bit?) and I know logically that what I am eating is not causing this. But that doesn't stop me from going over it again and again in my head to find some connection to eating peaches and feeling more tired.

Sometimes this need to find patterns is a good thing. But usually it is just a one-way trip to Anxiety Land.

Domino Effect

Well, the past few weeks have been limbo in the worst sense of the word. I was still on hold regarding surgery, which was making me anxious and depressed, and the lead-up to the election was the worst kind of stressor. It is all just a blur, thank heavens. I know I was really close to suicidal several times but hopefully I am past that.

Regarding the election - well, the worst possible thing happened. I still can't spend much time on social media because of the doom and gloom, rants, predictions, talking heads telling us how we're all going to die (or so it seems), and the occasional misinterpreted quote that just fans the flames. I will sneak on to see what my closest friends have posted and to get the latest on all the cute, fuzzy animal pages I follow and that's about it. I just don't have the strength right now to think about what the future may hold.

Regarding the surgery - on Thursday my OB/GYN Dr. Welsh called and said that she had managed to talk with my other health providers and she was confident that the surgery was a good idea. And I lucked out. No one wanted to have surgery the Monday after Thanksgiving so I only have to wait about 2 weeks instead of the usual 2 months.

My whole limbo state was a domino effect. I would see something on the news about the election and it would trigger my anxiety. I would tense up and that would make my shoulders and neck hurt. The pain would make me hunch over, which would make the muscles and cartilage in my ribs hurt. Then I would try to stretch everything out by leaning back, and that would trigger the pain in my pelvic area. Or it would start with the pelvic pain and work upward. I just couldn't win.

And that is why I am hopeful about the surgery. It won't get rid of all the dominoes, but it will remove some of them and will hopefully let me break the cycle. And if I can be in less physical pain, then I can take fewer pain meds and I won't feel so groggy and dizzy. I would be able to do my yoga stretches again (I haven't been able to do yoga for 2 months. Every time I try, my lady parts let me know that they are VERY unhappy) and that brings down my anxiety. If I'm not hunching over my midsection, then my ribs don't get so painful I feel like they're trying to puncture a lung. The shoulder and neck thing is common to my Fibromyalgia, but if I can stay calm and can do my stretches, that stays under control.

Here's to hoping we can get rid of those dominoes.