Limbo or waiting game

I seem to be in a limbo of sorts. I kind of waiting game right now. Maybe this is part of the stillness I'm supposed to be in, part of the trust in God I'm supposed to experience. Some of the things I'm waiting for  are the disability process to take place, to meet the disability lawyer, for the first disability approval/denial letter, the first appeal, the second appeal. Hopefully, I don't have to go through all of that and the Universe has already conspired so that it is approved of in the first instance. Being sick is extremely expensive. Thankfully, my family has been blessed and we have been able to manage so far.

I'm also waiting for the appointment with the geneticist. I have mixed feelings about that appointment. I'm ambivalent with a little tinge of avoidance, but truthfully, I'm scared. I'm scared because all my my hopes are riding on him, on this appointment. No one wants to be diagnosed with a painful illness with no cure and virtually no treatment. I certainly don't. But anyone would want to know the name and face of what has been hurting them for so long. Once you know the name of  your opponent it isn't as scary and healing can begin: physically, mentally and spiritually. However, if all my hopes are resting on this doctor and diagnosis, what will happen if its negative? At times, I feel like I don't want to see the doctor because it will be final, I either have it or I don't. But while I'm in the limbo there's the possibility that my joint pain, my headaches, my stomach problems could be caused by this mystery syndrome and there's a certain hope in that state of uncertainty. Of course I am going to my appointment, I need and want to know one way or another. I have to admit, there is also a certain amount of hope and relief in looking forward to finally having a diagnosis. I'll cross the "what if" bridge if I get to it.

I also have to wait for my appointment to have a numbing treatment in my lower back. Unfortunately, the first series doesn't usually work so I have to have second series before I start getting relief. More waiting.

This creates more waiting regarding returning to work. That's a real quandary. I don't know what will happen there. I just graduated form a very expensive school, in the career I have always dreamed of, working with the population I want, immediately working at a good agency, with great supervisors. That is a very rare thing! Am I throwing all of that away? Could I work 1-2 hours a day and see what happens? What if I can't keep up? What about do no harm? I get exhausted just from going to the grocery store! It would be irresponsible of me to take clients on and have to leave them because I can't keep up. I've had 3 doctors and a doctor in physical therapy tell me I can't work and have to go on disability. I experience a great deal of anxiety thinking about how to solve this situation on my own, cognitively. I churn it, twist it, add it, subtract it, multiply and divide it and cannot see its answer from where I'm at right now. All I see is joint pain, back pain, fatigue, migraines, nausea, stomach pain, juggling doctors appointments, therapy appointments, pills, pills and more pills.  I don't see a clear solution. I think this is one I have to place in the hands of my Higher Power and trust that he will make the path clear in a manner that will be best for all in involved.

I am fortunate as my husband has been extremely supportive and has not added pressure related to getting back to work, getting a diagnosis, medical bills, housework, dishes, dinner or our weed infested yard. It can always be done tomorrow or doesn't need to be done at all. He encourages me to take a break, reminds me of things often because he knows that I'll forget and even does the grocery shopping because I can't.

In this time of stillness, this limbo, I continue to seek peace and listen for answers.

Without saying a word

I've written about my faith in the past. I've been relying on it a lot lately and have been letting myself be guided by it. Maybe because I'm exhausted of hitting dead-ends, maybe because I have to believe there is something more, maybe because I just need to be believe in something. No matter what the reason, I've allowed a complete surrender of myself and my fate. I've allowed a complete breakdown of my walls come what may. Sometimes that breakdown comes with tears while on my knees. Sometimes it comes in the form of a conversation with a higher power, with God, as I'm driving my car. It doesn't matter how it comes, I just let it flow and trust that I will be taken care of no matter what my fate is, and that I will be directed in whatever my path should be. I should just be still.

Ironically, or maybe purposefully, in this stillness I have had two breakthroughs. They may be minor to the external world but they are satisfying and validating to my internal world. They give me hope and peace and they allow me even more stillness. They show me how I'm being taken care of by The Force, The Universe, My God while all I am doing is taking the time to take care of me, being still and looking to be at peace.

The first came when my therapist stated that she believed my symptoms were not psychosomatic. She stated that she "truly believed" they were organic in nature. She also believed the manifestation of depression was dual in nature, partly organic, that is depression caused by whatever disease was causing the physical symptoms, and partly mood related, that is as a result of coping with the organic disease and chronic pain. This was huge! This was something I knew in my core to be true but could could never, in a million years, make anyone believe could be possible, let alone someone in the medical or allied fields. And now I find a person reflecting my inner thoughts and feelings without my having verbalized them! I felt like crying, screaming, jumping, shaking...but I had no words, I was frozen, paralyzed because I could not believe that someone understood. Someone...finally...began...to understand, to see through to my core. And I didn't have to say a single word.

The second breakthrough came while visiting my primary care doctor. It was actually a visit for my son but he looked over some records that had come in for me because he calls me "his special patient". He suddenly stopped and got the light bulb look in his eye. He asked me a few questions, had me do a couple of movements and tested the elasticity of my skin. He said "I think you have Ehlers-Danlos Syndrome. I can't believe I missed it before. It explains every single stinking symptom you have from the headaches to the degeneration in your spine." He went on to state things like, "you hurt all the time and people thing you're just a whiner. You hurt and you don't know why you hurt. They tell you its just in your head, that you're just anxious and depressed which makes you anxious and depressed. Your stomach doesn't work right." He explained that EDS is a degenerative disorder in which the body stops producing protein and collagen necessary for the muscles and joints. Joints are extremely flexible and makes the prone to dislocations. They also pretty much hurt all the time for no reason, and they hurt a lot. He said "I would diagnose with EDS right now. You fit the criteria. I still want you to see a geneticist so he can confirm it." As terrible as the diagnosis is, it was still affirming. It was real. He believed me. And I never had to say a word. He externalized what I knew in my core to be true, and that felt good. It felt life-affirming....ironically, because EDS is not the diagnosis a person wants to hear.

However, having a name for what ails me gives it a face so I feel I can fight against it. I can treat it like the enemy,  I can treat it like my new normal. There is a protocol for it versus shooting blind and seeing what sticks. But, it is early. In the meantime, I will continue to be still. I will continue to trust. I will continue to look for peace.
 

Well it happened

Yep. What I said would with the Cymbalta, happened. And then some! It almost killed me!

It was my 7th day exactly on Cymbalta. All week I had flu-like symptoms as in aches and pains, but no fever or runny nose. Every day I had a headache. But on the 7th day I got a vicious migraine that crippled me and felt like my right lobe was cracking. I started treating with an Imitrex shot. It seemed to work early on allowing me to go through the activities of the day. But by early afternoon I was useless. I couldn't even enjoy Judge Judy! I took the second Imitrex shot and it was the same as nothing, I might as well have avoided trouble and expense of the shot altogether. I took two Tylenol just to feel I was attempting to obtain some relief.

By 8pm I had iced down my head and was working on my second ice pack and decided I needed to move onto something stronger so I took a morphine and a Robaxin. Mark was rubbing my head and covering my eyes to help keep the light out. Finally, I was able to get some relief and fell asleep, with the icepack under my right lobe.

The next day, I still had a migraine although not quite as vicious but still crippling. I moved to Frova just to try something different and longer acting in treating the migraine. It took half the day to take effect, but by early afternoon I was pain free. However, I still had the flu-like symptoms, but other than feeling warm to the touch, I didn't have a fever. I also had difficulty swallowing and it was painful to swallow, it felt as if there was something stuck. I also had a blood spot in my eye. I did sleep most of the day, whether due to the flu-like feeling, or the migraine.

I don't want to think of what would have happened if I had taken the Cymbalta one more night. I just think, thank goodness! I know there will be several doctors or so called specialists saying maybe I did have the flu, or maybe it was something else or maybe, maybe, maybe... Well, I say to them, maybe its the Cymbalta! In fact, I KNOW its the Cymbalta, becuase EVERY time I take a SSRI or SNRI I get sick! And after this I say its progressively getting worse!

Nobody knows more about me than me!

Guilt, worthlessness and hope

So what has been going on...feelings guilt and worthlessness. I feel guilty because I'm not working and I see Mark get up everyday and go to work. And I see the boys wake up early and go to school. Meanwhile I stay home. I realize lots of stay-at-home mothers do this, but these families have chosen to have stay-at-home mothers and its usually when the children are young, not when they are 15 and 17.

!feel guilty because I can't even keep up with the house work most of the time, or even with the cooking. The boys help me a lot with that. I feel guilty because I've gotten an expensive education and I'm not really making use of it. I feel guilty because I had a good career and I feel it slipping it through my hands but I can't reach out and grab it. I feel guilty and worthless when I can't drive Jan to band practice and can't drive myself around because of the migraine auras. I feel worthless on days when I think of going back to work, or cleaning and cooking and know that I can't because something or everything hurts. I feel guilty because I'm depressed. 

I feel a little less guilty when I'm able to cook a nice meal for Mark. I feel a little less worthless when I'm able to clean at least one room in the house, or fold the laundry. I feel a little less worthless when I'm able to put on some eyeliner and lipstick because my depression isn't as crippling that day.

I was recently told that I need to engage in some type of creative activity because I have too much "stagnated trauma". She doesn't know the half of it! I was told that I need to "act as if" to help my depression lift. I'm not adverse to trying creative outlets but planning attending an activity can be difficult. The boys can't be left alone together in the house and I can't always drive.

Then I started thinking about what activity I would like to do, what it is that I would really enjoy doing if I were going to commit to something. I wouldn't mind taking an art class. I also know of cake decorating classes nearby, even if I never decorate a cake in my life. But what I would really truly want to do, is take a creative writing class! That would truly give flight to my spirit and open windows into my soul.

I feel guilty that I want to take a writing class, or an art class, or cake decorating class. I feel worthless that with my level education that is what I have been reduced to.

But giving flight to my spirit.......it almost gives me hope.