I realized today that I had never recorded my whole chronic illness story. It’s very lengthy because I didn’t want to forget anything.
My story began about 3 years ago right after the birth of my son. Right after his birth I was feeling great-despite having had a c-section. I had been so sick during his pregnancy, I was just happy to have the 10 lb 10 oz kid out of me. I started feeling better and better, but then when he was about 2 months old I started feeling tired all time. I brushed it off, thinking it was because I had an infant. Then my hands went numb, and I ignored it. I have an extreme dislike for doctors, and I felt like if I went to the doctor they would just brush it off. Shortly after that my hands started to swell and hurt. I couldn’t do up buttons, open jars, anything that required dexterity. I ignored it. Soon after that my neck started hurting, especially on the sides. I went to the urgent care thinking it was some sort of infection. I was told it was probably my thyroid.
Then I went to the family doctor, where I brought up the sore neck and the swelling and pain in my hands. The doctor ran the standard tests, and they all came back negative for thyroid problems, rheumatoid arthritis etc. At the follow up appointment, I brought my son with me, and that was a mistake. The doctor said I must have postpartum depression. When I insisted that I didn’t have ppd and that getting this baby out was the happiest day of my life, he declared that I must have carpal tunnel, completely ignoring the fact that my left hand was way worse than my right (which makes no sense, since the right hand that I use all the time would have been worse). So I dumped that doctor.
I ignored my symptoms for the next few weeks, until the pain got even worse. My next trip was to an internist. He ran the standard tests, which all came back fine. He tried the postpartum thing is well, but when I argued he refereed me to an endocrinologist because he thought I could have a lump on my thyroid. So I went to the endocrinologist who found out I did have a lump on my thyroid, but he told me that would not cause any of my symptoms. He told me it was postpartum depression and wouldn’t listen to me when I explained that I was not depressed.
The endocrinologist sent me to get my thyroid biopsied and the biopsy turned out negative. I wasn’t convinced the endocrinologist was right about my symptoms, so I went to another one. This doctor said she didn’t even know what they had biopsied, my thyroid was perfectly fine. She questioned the validity of the other doctor and again PPD came up. Seriously people just because I had a baby and I am having health problems does not mean I am depressed! Believe me, if taking anti-depressants could have fixed my problems, I would have taken them.
So I was back to square one and my symptoms kept getting worse. The pain moved to my knees, arms, shoulders etc. I was in so much pain I could barely move. I was ready to give up, but my husband forced me to go see a rheumatologist. The rheumatologist was the first person who looked at me and said, “something is wrong, I can tell.” But all my labs came back fine, as always. So she diagnosed me with fibromyalgia, because I did have all the tender points required to meet the diagnoses (and more). At the time, I didn’t really believe in fibro, not that I thought people were faking, more like it was a diagnosis you get when the doctor has no clue what is wrong. I fought the diagnosis for a long time. After about six months, I finally decided that I better just accept that this was how my life was going to be. I still felt horrible all the time, but I started to learn to manage it.
Along the was a visit to an ENT for swelling behind my ears and intense ear and neck pain. After a cat scan and multiple visits- no answers. Then the pain spread to my mouth and so I went to the dentist. The dentist diagnosed me with TMJ and gave me a mouth guard to wear at all times. This at least helped with the ear pain.
Then my sister in law told me about a fibromyalgia/CFS doctor that was really good. I kind of put it off for a while because I hate doctors and I was tired of them giving me a hard time about my pain, weight, and supposed “depression”. Finally my husband bugged me enough that I made an appointment with the doctor, purely to make him happy. But I was pleasantly surprised by the appointment, not once was depression mentioned. She also asked if I had been tested for Lyme disease, and when I said no, she asked where I was from. I told her I was from Michigan, and she said that we should test for Lyme, just in case.
Well, surprise! It came back positive for Lyme, which shocked both me and her. I’m actually one of the lucky few Lyme patients who had a positive test by CDC standards. The doctor couldn’t believe that no one had ever mentioned Lyme to me before, and I couldn’t either! She also diagnosed me with CFS and Ebstein Barr which she felt had resulted from Lyme destroying my immune system, which was basically none existent. I thought all my problems were solved, all you have to do for Lyme is take antibiotics for a little while and you are cured!Well, turns out that isn’t true. After Lyme treatment I’m left with a broken and damaged body from the years I went undiagnosed. Now I live with the consequences of all those bad doctors. My Lyme could have been cured in the beginning with one bottle of doxycline, but now I’m left with being and pain for the rest of my life. I will have fibromyalgia forever because there is no place in the medical system for people like me.
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Your story is so similar to mine! Probably if I had gone to the right doc, I would have also been diagnosed with fibro, but alas, after a year of pin-the-tail-on-the-diagnosis, I have Lyme. I am at the end of my initial treatment, 2 months of Doxy, and it is not showing up on any tests right now, but some symptoms still persist. Much of your story hits home! I blog also 😉 and am a mom.
I can soooo relate to your "pin the tail on the diagnosis"!
Just came across your blog today and read several of your posts and stories.
I copied your address into an email and then decided I was way too tired to write.
Just wanted to let you know you aren't alone in your coexisting illnesses.
did you ever get anywhere on the lyme front?
I pursue that for a while and then the top Lyme specialist said that the Lyme "had been sufficiently treated" but had done extensive damage to my body. Boy was he right….stuff keeps adding on year after year. He was a neurologist and said that I did have fibro as well (first official diagnosis of such–fall of '05).
I am now the mother of 2 way to active girls and the possessor of way too many ailments.
Just want you to know you are not alone….and to find out if the lyme mystery was ever solved.
I've been to so many different drs and most "don't believe in chronic Lyme, Advanced Lyme, or Fibromyalgia, hormonal imbalances, etc. It is not a fun journey and I hate that it defines and restricts my life so.
Sorry having a dark day here in Sunny FL. 🙁
Hi Cassie, I'm so glad you found me! I always hate to hear when someone else is having a miserable time of it, but it's really nice to know that other people have similar struggles. I'm still fighting the Lyme disease battle, a whole year later. I'm going to try IV antibiotics next month, and if that doesn't work then I'm done with Lyme. I'm having difficulty with deciding if I feel like crap from the after effects of untreated Lyme, or if it's because Lyme is still active. That's interesting that a top Lyme specialist told you it was just after effects. I don't have access to a real Lyme doc so I sometimes wonder if I would get different information if I did.
How do you deal with being sick and being a Mom? It's been kind of a rough ride lately, and I would love to hear from someone else who knows what it is like.
sorry….meant to say the top lyme specialist in NY at Westchester Medical Center Valhalla, ny
Ill try to share more another day…soory way too tired
Athough my children are a bit older now, I felt like I was reading my own story. I was forced to stop working when my boys were only 3 and 5 due to autoimmune disease. Although that comes with its own challenges I have to say 10 years later the most difficult part is the loneliness. The earlier years were very busy managing 2 very active boys. Now, my boys are teenagers, athletes, and have a packed schedule of practices. I find myself looking forward to the random conversations with the checkout girl at the grocery store. Often times feeling as people must think ” Is this woman really this friendly to strangers or is she just crazy!” Through my own personal health challenges I have unfortunately lost the connection I had with all my old friends. I miss the girls nights out, the moms weekend away, the sunday morning brunches with the girls. I have really struggled with this especially this past year as my boys are gone more then they are home. I should also mention that I am happily married to a wonderful husband and father. He works fulltime, and coaches our sons team. I realize as the boys have become more imdependant, I can not just rely on my husband to make me happy. It has to come from within myself. I find some comfort in reading your post to know I am not alone in my loneliness. I love to attend my boys games but realize I really need to find a way to make new connections with other moms. This is very hard now because I have come to know so many great moms through sports, but of course they are busy, most juggling careers, and have their own connections already. As nice and friendly as they may be, I feel where can I fit in? I would welcome any feedback. Thank you for sharing. I will end by saying how accomplished can we feel from cooking a nice dinner day after day, that each family member will eat at a different time due to schedules. How clean can the toilet look only to be ready for that bleach 2 days later, or the nice vacuum marks that disappear and are replaced with the salt and sand from all the size 13+ shoes coming in and out multiple times per day? I feel as I clean and clean and organize, only to see the house resort back to the same chaos by end of day. It seems like a never ending job with absolutely no sense of accomplishment. Without other friends to escape the same day in and day out, I find weekends and weekdays almost blend together with not much to look forward to. Maybe its because our kids are teenagers, and aside from taxiing them to and from, we do not get much quality time together. When they were younger, they loved hanging and playing with mom, they were my little bff’s. I filled every waking hour spending it with them, It is the hardest thing to let go when they start to get more imdependant. I am grateful every single day for the smart, funny, hard working young men they have grown to be, but I long for those days where the only thing I needed to make me feel content was a hug, a snuggle and their smiles. I would welcome any comments or replies.
I can totally relate to the loneliness you talk about. I hate how being sick has isolated me from other people. It seems like everyone is so busy and always has so much to do and I don't always. Granted I could always have a cleaner house but that takes extra energy! It is really hard to fit in with people who have normal healthy lives, it's something I struggle with. I have a couple truly close friends who are healthy but are open minded about my struggles. They know me well enough to understand when I cancel plans or flake out on certain things, but it has been really hard to find people who understand me like that. Most of my friends don't quite get it. They know I disappear every once in awhile so they think I'm kind of flaky. They're friends with me anyway and I'm friends with them anyway, but it does make our relationship not quite as close.
I know exactly how you feel when it comes to cooking and cleaning! It seems like I waste so much energy doing those things and then I just have to do them all over again and nobody appreciates them. I wish I had better advice because this is something I really struggle with. I do not find cleaning fulfilling and yet I have to do it and it prevents me from using my energy on something I enjoy. Being sick is so hard, I wish that there were easier answers to these questions! The reason I keep this blog is because it helps me to realize I'm not alone and that there are other people out there who deal with the same problems. Even if there are no easy answers at least we can connect and know that other people have the same struggles.