Most of you already know that I have been struggling with mounting health problems for the past several years but many of you still don’t understand exactly what I’m facing each day. So I have decided to follow my cousin Kristi’s lead and explain it all here.
Every since I was around 13 years of age I have struggled with mysterious fainting spells that sometimes lasted up to two hours. Doctors couldn’t seem to figure out what was wrong with me or why I was continuously having these episodes. Over the years the spells progressed and I would have them more frequently. Test after test was done and different medications were tried to no avail, until in early 2004 I was FINALLY diagnosed with a rare form of epilepsy that would continue to increase as I aged if something wasn’t done. I now take an anti-seizure medication that mostly controls those episodes, though still not entirely.
I thought epilepsy was the worst of my troubles until in mid summer of 2006 I began suffering from minor aches in a few of my joints. I thought at first that I had been overworking myself and passed it off to getting older. When the pain begin to increase and started affecting several other joints I started to worry. I didn’t have health insurance and we were struggling financially at the time so I didn’t immediately seek a doctor. By February of 2007 I was in so much pain that I could barely move and when I did it was excruciating. Every joint in my body were inflamed, swollen and bruised and I had lost all ability to even dress myself. I was completely bed bound and even just lying in bed was painful. I barely slept and nothing I took for the pain helped.
I finally called and begged the health department to help me. I was nearly hysterical and was sobbing pathetically as I explained to the health department nurse that I didn’t know how much more I could take but I didn‘t have the money to pay. They agreed to see me but could do little. They did blood test and discovered that my white blood cell count was through the roof and I had a lot of sediment or ‘trash’, as they called it, in my blood but they didn’t know why. They could clearly see the swelling in my joints and could tell that I had severely limited mobility. I frequented the health department for test but they are unable to give out strong pain medications so I had to continue in pain for nearly year as my condition just got worse and worse. Ultimately in the end they had to send me to the hospital emergency room because their hands were tied and they didn’t know what else to do. Of course that didn’t go well and the medical bills just kept mounting.
After nearly a year and half of being bed bound and in excruciating pain I was FINALLY sent to a rheumatologist who diagnosed me as having a severe auto-immune disorder called psoriatic arthritis. It is extremely rare for someone to have such a severe case of it as I do, especially as young as I am. Leave it to me to have ANOTHER rare condition!
Psoriatic arthritis is often proceeded by a serious skin condition called psoriasis which I have on my scalp and forehead. I had had mild cases of it since I was teen but never anything like I have now. Psoriasis is marked by a rapid buildup of rough, dry, dead skin cells that form thick scales. The arthritis that occasionally follows someone with psoriasis causes severe pain and stiffness in the small bones and joints. Both are autoimmune problems - disorders that occur when the body’s immune system, which normally fights off infections, begins attacking healthy cells and tissue. The abnormal immune response causes inflammation in the joints as well as the overproduction of skin cells
What are the odds I would have a rare form of epilepsy and severe psoriatic arthritis?
Well here is yet another rarity…
A very small percentage of the people who get psoriatic arthritis, myself included, have what is called arthritis mutilans - a severe, painful and disabling form of the disease. Over time, the mutilans are and will continue to destroy the small bones in my hands and feet, especially my fingers and toes, and will lead to permanent deformity and disability.
To add to all that Psoriatic arthritis is a systemic rheumatic disease that can also cause inflammation of the body tissues away from the joints other than the skin, such as the eyes, heart, lungs and kidneys. There is as of yet no cure for it, only treatments.
So anyway after the diagnosis the doc put me on a low dose of chemo in order to try and kill off some of my immune system so that there would be less to attack me. For nearly another full year I was on chemo alone for treatment and it had little success unless thinning my hair was the plan. The doc finally decided to get me on Humira along with the chemo. The Humira allowed me to move again, though it didn’t completely make me better. For once in over two years I could sleep properly again, and could do a few things on my own again.
Humira which is an injectable medication that I have to have every other week also kills my immune system. So I have to take more precautions to keep from getting an infection that someone with a normal immune system might. So when I developed a kidney infection last November I had to stop taking both the chemo and the Humira in order for my body to heal. Without the meds, my bones once again begin to get worse but there was nothing I could do to stop them.
I have since begun my injections again, I restarted them six weeks ago. They haven’t had a lot of time to get kicked in real well again, but I keep hoping. I have not currently restarted the chemo because my husband and I had wanted to try for a baby again but I may have to have chemo soon for other reasons, which I will explain later.
On top of all my other medical conditions I have what is called PCOS- Polycystic Ovarian Syndrome. I know many of you ladies have a form of it yourself. There are so many symptoms to PCOS that I wont go into all of them here but I will say that I have had it bad and it has most likely destroyed my fertility. Because PCOS affects the endocrine system which in turn controls nearly all the hormone levels in the body, the hormones that regulate the female reproductive cycle gets off balance. Because I have had irregular cycles for years my uterine lining became too thick and painful cyst developed on my ovaries. A thickened lining can cause uterine cancer and apparently in my case it has.
I was recently diagnosed with uterine cancer and told that the best option was to have a complete hysterectomy but because I am still of child bearing age and my husband and I so desperately want a child we have decided to try and save my uterus. We were told that it was possible that an aggressive hormonal therapy could save my uterus for at least a short window of time in order for us to put in one last effort to conceive. In most cases there is a 30 to 50 percent success rate with hormonal therapies, not the best odds be we were willing to risk it. The odds of the cancer recurring are extrememly high and is it often more aggressive.
We have undergone fertility treatments in the past with no success but were prepared to try some stronger methods, including the possibility of invitro-fertilization.
The problem now is that I had an appointment with an oncologist Tuesday and during that visit the doctor discovered a large, mysterious mass behind my uterus that isn’t supposed to be there and now things are on hold until we know what that is and what needs to be done. I have an ultra sound scheduled for Monday of next week. The doc said it is possible that I have ovarian cancer as well as uterine cancer and in that case I could lose it all and have to undergo radiation and chemo.
I am not telling this story for sympathy, I am telling it so you all will know why some days I am too sick to get on the computer and I miss a lot of family gatherings. I may struggle physically but my life is great in other ways. I have my God and my wonderful family. I have my amazing husband who came as a package with another wonderful family and I love them all dearly. I have a roof over my head and food to eat. I attend a fantastic church full of loving, caring people and I still have my mind, what‘s left of it. :c) So my life really is MUCH better than it sounds in this note. I’m not complaining, or least I’m trying not to, I am just informing. :cD
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