It is so hard to openly discuss my depression and anxiety. For so long I had unexplainable symptoms, chronic pain and chronic fatigue with no real understanding of why. Aside from being autoimmune I went without answers and treatment for quite some time. Physical pain leaves its emotional mark, trust me. It’s traumatic to be told over and over again that they are unsure of what is wrong with me or how to help me. You start to feel crazy, even if no one is calling you crazy. You start to feel alone and like a burden. I think until then it was much easier to talk about things, be open and get help.
I think also being a parent makes you feel like you have to be strong and as long as you are being a good mother – then you’re okay. I really wasn’t and haven’t been though. Being without health insurance intermittently and for most of my life, I never really had a steady doctor or health support system; and here I am with a various illnesses, probably exacerbating one another. In the midwest there is this mentality that if you work hard that you will eventually make it. I naively believed that, and I spent about 13 years living that. I always felt like I was on the cusp of something. Like you are so close to making it you can taste, but the truth is life or the universe or whatever does not care how hard you are working or how much money you are making – what’s gonna happen is gonna happen.
So you end up back in the same fucking situation. People struggle to understand this one. It is a cycle. Especially if you start out at a disadvantage. Something big – a catalyst would really have to happen for things to really change. So you feel stuck. Even with financial problems, lack of healthcare and health problems I still manage to find this drive and remain ambitious. It is not always easy to fight through the illness and keep focus.
I think there are definitely times that my body and brain are just completely overwhelmed. I have always struggled with the idea that I am depressed, I don’t feel hopeless. I think over time I am learning that not everyone reacts to depression the same. I am stubborn beyond belief, asking for help has always been difficult for me. So, most of the time I suffer through it all alone. And that’s exactly how it feels all alone.
I have had a lot of trauma in my life. Trauma that I used to be able to talk about much easier, but over time and it has gotten harder. Sometimes in life you end up trusting the wrong people and it really bites you in the ass. Or you put your neck out there for people that you care about and it just ends up hurting you. Imagine so much empathy and love that you consistently tell yourself that no matter how many wounds it opens for yourself – you need to help . That is me, all the time.
Obviously, since I am identifying it – I am learning from it. These last few months have been rough. A lot of ups and downs. Still, I hold onto that hope and ambition. But it isn’t a switch you can just turn off and on. Even after making the huge decision to pick up our lives and try to find healthcare, opportunity and hopefully close some really painfully awful chapters of my life. For awhile things were okay or at least manageable. I’m doing yoga, leaving the house, journaling and coping really well. I had a plan and I felt good about it.
Things began changing after my last trip out of town. I was gone a total of 4 days and only worked about 10-12 hours that Saturday. After getting home it took me 9 days to “recover”. I spent 9 days sleeping nearly 20 hours those days. The pain and exhaustion just did not stop. I can barely walk and I am flaring. It just became really apparent that I need to make more changes , the stressors in my life, reinventing my business and changing my lifestyle- because I can’t keep up the way I have been.
Right now, I feel paralyzed. I’m having trouble keeping up with tasks and completing them. I just feel like my mind is being pulled in so many different directions right now. Trying to cope with the pain, trying to stay focused on the bigger picture. I have been so faint and exhausted.
It is nice to know that I finally have answers, healthcare and doctors that listen; it can also be overwhelming. All I have ever wanted is help and now that I have it – it’s weird. It’s also a lot to keep up with – I have multiple doctors, the kids, the school, Noah’s needs, Arianna is still at home. With every answer comes more questions with the doctors too. Even when we figure out what’s going on, that just means then we have to find the right course of treatment. Out of sheer exhaustion, I missed my last rheumatology appointment, I had trouble getting my prescriptions filled and that just added to what my body was already going through.
Next month I will undergo the first of possibly 3 procedures to help treat several vein diseases. The first procedure will be done directly after a venogram. My vascular surgeon will go in from my neck and groin and implant stints in several compressed veins. Back in 2010 I was diagnosed via laparoscopy with pelvic congestion syndrome and then recently it was discovered via ultrasound that I also have nutcracker syndrome and May-Thurner Syndrome. Right now the first surgery is scheduled for November 28th and will require a little recovery but should be noninvasive. If the vein from kidney is too compressed they may have to do open surgery, but as always we just hope for the best. From there I will have 2 more procedures where they will place foam and coils in a number of other veins and start blood thinners.
While this is going on my primary believes she found the reason I become so faint and having tachycardic episodes and trouble breathing. Since 2008, I have probably visited the ER over 20 times from this. My EKG’s come up normal and they send me on my way . She found a small irregularity or defect, I think she called it. To verify, I have a referral out to a cardiologist and will go back on a halter monitor.
I also not very long ago got back a test result from my rheumatologist office and it showed that I was positive for chronic hepatitis B and a previous hepatitis A infection. My primary also did an ultrasound a few months ago on my upper right quadrant, because since about 2010 I have had intense sharp pains in my upper right quadrant and back that sometimes lead horrible diarrhea and vomiting. In fact, I have had several week long hospital stays over these symptoms. Like every other time my gallbladder has been checked the ultrasound and blood test come out fine. Not great, but functioning and no reason to cause such intense pain and make me so incredibly sick. She did find a small growth on the right lobe of my liver but said it should not cause pain and the test result said it should be checked yearly. With the hepatitis results though. I think it might be worth looking into.
I also am still awaiting scheduling for an endoscopy and colonoscopy for that same upper right pain so that we can rule out other conditions as well. My Rheumatologist also found spondylitis in hips and shoulders along with the arthritis. The Spondylitis has caused e-fusions in my right hip and shoulder and he thinks it might be caused by anklyosing spondylitis. He was able to give me a steroid shot in my right shoulder and hip and that did help my mobility but only for about 5 days and I cannot have another one for 6 months.
It is just a lot and I’m hoping getting some of this off my chest will help me self-motivate and work through this. I have so many things that needs taken care of, but I feel so paralyzed. For now, I’m trying. I’m resting and trying to get back to journaling and just take care of myself, but sometimes its the hardest thing to do. Tomorrow I have a doctors appointment and hopefully from there I will find some relief. This week has been the week from hell, I’m still not recovered from being sick, I got stung by a bee (I’m allergic) and just keep falling down. I’ll check back in on here as soon as I can, but tonight I think I am going to prep for my doctors appointment and hopefully make the most out of it.