Yesterday's turn of events was a huge blow. 9 years of waiting, 3 years of fighting, and 1 year of planning with several different physicians - all to waste. Because of one doctor.
Here is the good news - I could potentially get an entirely new team of doctors. This is the plan. And I will drive or fly anywhere to go to and find this team of doctors.
Here are a few reasons why yesterday turned out to be so devastating.
- the planning and preparing and having it dangled in front of me as a definite plan, all the way up to signing the consent form, and then to have it ripped away is just plain cruel.
- new planning could take up to another 2 years or longer.
- without surgery I am on zero hormones. With surgery I could have gone back onto hormone add-backs.
- I will have to stay on a medication which, as I have been previously told time and time again, is very dangerous and should not be taken long-term. It also will lose its efficacy over time. It also happens to be the most painful injection I have ever had apart from one other treatment.
- this is the best that it will ever get. I have no more options. Nothing left to try to help with the symptoms I have.
I tend to stay as positive and light and determined as I possibly can. I have not felt this devastated in years from a medical standpoint. So it is tough to stay light and determined right now.
With surgery out of the picture for now, there are a several symptoms that will stay a reality...indefinitely.
The nausea has never truly been figured out. I still cannot have a shower without vomiting and I become severely nauseous from walking too quickly. This nausea, combined with hip pain and general weakness, also prevents me from being able to climb stairs without severe difficulty. I cannot take hormonal addbacks because they cause a cycle, which is dangerous for all of my other illnesses.
There are also about 10 reasons, involving several different types of pain as a symptom, that are too personal to share online. This means more pain medication.
I have tried to keep my pain medication dose low, holding on until surgery, holding on until we try this final thing that might help, but without working towards this, I am going to need to require higher doses. This can be dangerous in a couple of ways, including dependency (not to be mistaken with addiction).
The bottom line is that I CAN live the way that I am living. I also believe that I deserve better - even just a little bit. And it is much harder to come to terms with some of my realities when I have no other treatments to try - nothing to prepare for or wait for or look forward to (treatment-wise).
So what do I do?
I take a few days to completely cry it out. (Working on day 2 of almost constant crying).
I purposely get myself out of the house even though it is the last thing I want to do.
I come up with a new plan and start putting it into action.
I keep distracting myself with other endeavors and other plans.
I book appointments like I always do.
I play fetch with my puppy.
I write down everything that happened.
I allow myself to feel angry, sad, devastated, defeated, disappointed, etc...
I will give myself several days to digest what happened and 'snap out of it'.
It is a lot easier to be strong when you know that there is a possibility of trying something to feel better.
I think the toughest part is that I had had plans for after surgery. If it helped, which was a coin toss really, but if it helped one symptom, it could allow me to do some things I haven't been able to. But unless another team takes on my case, this is the best that I will feel in that department. And frankly, I deserve a chance to make things a little better.