Starting a blog about my health problems has been much more difficult than I ever imagined it would be to say the least. The few posts that I’ve written have been very difficult to write because it has brought up so many emotions thinking about every thing that I have been through with little to no answers. I am having to relive it all when I wish I could forget or ignore it. To devote any time at all feels like I am giving my illness more power by taking time away from the things that I would much rather be doing in life, but can’t because of my illness. I didn’t know that writing about my illness was going to make me feel this way. It’s been a little like someone dumping ice cold water over my head and having the wind knocked out of me all at the same time. I am still on my journey for answers. I have not given up on finding help, but I have come pretty close the last several months. It would be much easier to write about my illness if I had found help as well as a diagnosis. I could write about my journey which has ultimately led to answers and a better quality of life. I could share that type of story, even shout it from the roof tops and hopefully inspire others to not give up. Unfortunately, I am not there yet. I’ve learned that coming full circle doesn’t necessarily bring answers, much less positive outcomes. I feel my body getting worse despite medicines, diet, and lifestyle changes. I know there is help out there, but getting to help is a different story. Mast cell specialists are few and far between. Wait times are extremely long and appointments can be almost impossible to get without a good local team of physicians willing to do the steps necessary to get you through all the hoops you have to jump though for an appointment. There is only a handful of doctors who know how to test, diagnose, and treat this disease and it’s comorbidities. If you are fortunate enough to get to the right people, you still have to have a good team locally where you live. It’s not manageable without, and not having at least one local physician willing to take on the task makes mast cell disease all the more dangerous. Last November was a perfect example of this danger when I had a Hospitalist refuse to prescribe my daily antihistamines and emergency meds while in the hospital. I’ve dealt with physicians, nurses, etc not believing me about my allergies, but this situation took the cake. And it is why I am so fearful of ever stepping foot into a hospital again.
I was recently diagnosed with PCOS. I am thankful that I finally got this one “tiny” thing (compared to my other problems) diagnosed. I felt such relief when my doctor’s office called. They want me to start a daily injection for my insulin resistance, and I am to give them a decision about going back on birth control. A place I never wanted to be at again, after finally getting off of them after 7 long years. Birth control pills are the best way to help control Endometriosis and PCOS. Endometriosis is suspected, but I will not know for sure unless I let them do surgery. This brings me back to the primary issue I need addressed and diagnosed more than anything else: mast cell disease. I am terrified to agree to surgery because I have yet to find a local physician who will step out of their comfort zone and educate themselves on mast cell disease. I have taken brochure materials from the top website for mast cell diseases and expressed my concerns numerous times, but it’s been ignored. No one is stepping up to the plate to figure anything out. I’ve even requested a call be put in to one of the “experts”. My concerns are not heard, and my requests for an emergency plan and pre-procedure prophylaxis is ignored. It is unbelievably frustrating not only as a patient, but as a nurse who once believed so strongly in our healthcare system. It is unfathomable to be treated this way. I know of no other profession where you could have a business and not provide the service that you are being paid to provide without consequences, but I digress as this is a complicated topic for another day.
My feelings and fears of hospitals, doctors, procedures, etc are not unfounded. They come from a lifetime of negative experiences. I know my body, and I know how my body reacts better than any doctor. For example, I have never had anything done to my body without some type of complications. My body does not react like a “normal” body. If a medicine is supposed to do one thing, my body will react by doing the opposite. Something always goes wrong. I have been allergic to every stitch I have ever had after a surgery or biopsy. I react to Normal Saline flushes and IV fluids with worsening Angioedema and throat swelling. Not only that, I am highly reactive to sunlight and fluorescent lights. Most recently, CFL bulbs have started bothering me. My skin burns, I rash, I swell, I get nauseous, headaches, stomach upset, pain, etc. Last November when I was hospitalized with a high WBC count and suspected sepsis, I also reacted to the IV tubing. I had a blister exactly where the tubing was touching my arm in addition to my throat swelling. I have been unable to find any type of tape, adhesive, band-aid, etc that I do not react to. In fact, last Fall I had a skin biopsy, and could not find anything that did not cause blisters including gauze. The blisters and burning were so painful I couldn’t sleep at night. I alternated between the type of gauze I used each morning and night just to try to minimize the reaction I got from every type of dressing I tried. Nothing worked, and it was over 2 months before my biopsy site closed enough that I could leave home without it being covered. My heart never behaves, either beating too fast or too slow. It never reacts how a “normal” person’s heart would react in the same situation. My blood pressure can plummet at the drop of a hat, and of course does with severe reactions. Other times, it shoots up like a rocket. When I have anesthesia, it generally takes at least 2 weeks before my heart rate recovers to my “normal”. My blood pressure and gastric motility take this long as well. So understandably, I try to avoid procedures as long as possible especially since my local physicians tell me that it is not possible to have the reactions that I describe to IVs and fluorescent lights. Ironically, these same physicians comment on how red and rashed I am when they see me in their office never making the connection to their fluorescent lights.
I just hope, that at some point soon, I get to someone who will not only listen, but be an advocate for me with the local nonsense that makes me feel like giving up.