I have some delightful pictures to post soon! However with the holidays and recovery I’ve been too busy to post! But I will soon! I just wrote this recap of the past year and decided to share it with you. Its not horribly graphic but it is detailed. Mind you, all of this was happening while we bought this house in August! Wow! What a year!
December 31st, 2008 Miscarriage, D&C. Saw the baby on the sono screen with no heartbeat and no body heat. God took the only positive thing that had happened to me in 2008 and caused it to be the deepest grief I had ever experienced
January completely immobile from leg pain, exhaustion and cognitive thinking almost gone
Still suffering from the miscarriage and end up in the ER due to excessive bleeding and pain
February what we now know was a stroke wreaked havoc on my body. Two MRI’s later and doctors still weren’t any closer to a diagnosis.Unable to care for myself I end up relying almost completely on my parents to watch Grady.
My face was so crooked that I never smiled right and the damage was so severe on my left side that I could barely grasp anything with that hand.
Start to experience severe chest pain. I will never forget the first time it happened. I was sound asleep, 8AM. The pain had me convinced I was having a heart attack. This continued to happen and started happening more frequently. ER doctor tells me it must be a panic attack. In the middle of the night. Riiight.
March I experienced another stroke, ended up in the hospital and this time the doctors sprang into action. They decided that I really did have APS along with Mixed Connective Tissue Disorder and immediately started me on a regime of coumadin.
Started on a steroid for leg pain and I get severely ill. Can’t keep even the smallest of snacks down. Have to stop the medication and leg pain returns.
Getting pregnant is absolutely not an option since coumadin causes birth defects and they want me to be on the blood thinner for at least a year before we try again. However birth control pills are not an option due to the high stroke risk. Left with fighting insurance to approve an IUD or getting my tubes tied.
April my first period on coumadin knocked me off my feet. I couldn’t believe it was possible to bleed that way and be racked with cramps. The hospital gets to see my “smiling” face in the ER again.
My OB petitioned my insurance to approve paying for the $600 dollar IUD. They didn’t reply.
As the weather gets warmer, some of my muscle pain reduces letting us know that a lot of my pain is related to the temperature
After my cycle was completed, I continued to bleed. I’m put on uterine cancer meds.
May my OB decided to donate the IUD to me since he felt it would help as not only birth control but help control the bleeding that had started.
Surgery went well and I looked forward to having a normal period again.
Bleeding after surgery did not stop. In fact, it intensified.
June found me in the ER twice. The bleeding would get so intense that by the time I would switch a pad and walk out of the bathroom I would have to turn around and go back in. Eventually I just couldn’t take the cramping and bleeding and visited the hospital.
Headaches started plaguing my poor head. I would wake up with them at night and they would strike at the most awful times. Doctor prescribes pain meds while he tried to figure out what was going on. My theory was that I didn’t have headaches BEFORE I had the IUD put in.
ER visit due to headaches. Started having some neurological symptoms so my doctor sent me in. They did a ton of tests and found nothing. Primary care looks at my cat scan and decides slight congestion in my left sinus is the culprit for my headaches. Starts me on a very high dose of antibiotics.
For three weeks I continued the antibiotics with zero symptoms of a sinus infection other then a headache. But the doctor was determined that it was the reason for my headaches. Then I experienced the most God awful pain in my stomach. The doctor had me on antibiotics for so long that I had developed a colon infection. You have never experienced an infection until you have had a colon infection. The pain comes in rolling heat waves that make you nearly pass out.
July finds me realizing who my true friends are. Many people just don’t realize what its like to live this way and somehow find my way of life full of drama.
The doctor, never admitting his mistake started me now on a different antibiotic to fight the raging infection in my system. Took another 3 weeks to recover from this infection. With, of course, another trip to the ER when my period hit at the same time I was having other horrible symptoms from the infection.
I could hardly leave the house from the excess bleeding and infection. It was horrific.
Pain from severe cramps was getting more then I could bare. My OB upped the uterine cancer meds. When they did a sono they found a huge cyst on my left ovary. They hoped with time it would clear up.
August I couldn’t walk upright due to the intense pain in my abdomen. OB decides its time we remove the cyst. In the hospital again.
After the surgery my doctor came in and told my family that I had severe endometriosis. Which was probably contributing to my pain.
Bleeding is always constant and gets me bedridden when my period hits.
September guess where I am? The hospital. The bleeding caused me to become severely anemic and I actually passed out in the doctor’s office trying to get in to see the doctor. He admitted me immediately.
My body actually gets rid of the IUD on its own. While I am in the hospital I get to meet a hematologist which is a doctor that specializes in my disease. None of my prior doctors would give me a referral to one even when I begged them to.
The doctor doubles the dosage of the uterine cancer med to the highest dose he can possibly give someone. The bleeding dies down a little.
The OB wants me to start on chemo for the endometriosis. The side effects list were a mile long and the instant I would stop the chemo the endometriosis would return. It was not worth the risk to add even more symptoms to my list for something that would not give me lasting relief. Plus, the medication was $200 a month while I am on it. So I am left with the options of chemo or hysterectomy.
Bleeding so severe I’m forced to do laundry every day since I would run out of pj’s to wear. No matter how much protection I have.
October another period hits. This was the last straw for me. I couldn’t even shift my position on the couch without bleeding through whatever I was wearing. I went in for a hysterectomy consultation.
Doctor can’t schedule me for surgery until December 4th.
November another period strikes. I was completely immobile. Floyd had to take time off of work to help take care of the baby and get me around. He has had enough. He calls the OB and begs them to move the surgery date up. Its moved up to November 18th.
I start preparing for the surgery. Its a huge mental, emotional and physical thing.
Due to my blood disease I had to stop the coumadin and start giving myself shots. Four days before surgery and four days after.
The day of surgery my husband and father brought me to the hospital. It was filled with additional trials on top of the surgery. I had been terrified of releasing myself to have the surgery. To close my eyes and sleep. I was also terrified of waking up and realizing that it was over. That the deed was done. Of possible regret
Surgery went well. They had to take my left ovary due to abnormalities. I was in the hospital for three days after surgery.
December I am four weeks post op. I’ve had to deal with more retarded doctor bologna that is sometimes horrifyingly depressing. Its as if there is no one in the medical world that is on your side. I’ve been dealing with the recovery on my own. I’ve torn one of my incisions twice.
I started a diet. I’ve cut out all refined sugar and almost all carbs. Its been hard. But today, four weeks from surgery, I’ve lost 16 pounds. And there is more to loose where that came from!
I have hard days. Emotionally. But today for the first time in forever I drove myself, by myself to a doctor’s appointment. I did some hair! I played with Grady. I had ENERGY. I had some exhausted points but, nothing like before. Its getting better. Slowly but surely. I think I am getting there. All I can do is pray that by this summer, I am the Tara that I used to know.
Me! I can’t wait!