I can’t believe it’s been 9 months since I last posted on here. I had such good intentions of updating, then life happened. I thought the roller coaster we were on was one with a few hills and descents- little did I know last July that just around the corner lurked a roller coaster that would rival anything I had dealt with before. Due to health issues just about all home reno has had to stop. I’ll explain more on that in a bit. Gene’s recently changed jobs, but that was for the good and we are so happy about it. We have had a lot of doctors’ appointments & a few therapy sessions. In August and September I took the girls to a combined total of 50 appointments. We stopped seeing the chiropractor in August when we realized the adjustments were causing us to have more dislocations (this may not be the case for everyone, but all 4 of us agreed on this for us). In the last 9 or so months Hannah, Rachel, Caroline, & I also started getting treatment for Fibromyalgia. We have had a few ups and downs during this time and I wanted to share some of them with you.
Sarah has been much improved in the last few months. The first struggle since her breakdown was overcoming her feeling of rejection and grieving that. The next biggest struggle was her eating. It seemed like most everything caused her stomach issues, which in turn caused extreme pain, which led to anger and lashing out. Sarah is mentally about 6, deaf, and autistic. When she begins to hurt, she doesn’t understand where it is coming from and doesn’t know how to communicate that, much like a young child. We have been doing a lot to work on her gut health with probiotics as of late and have seen tremendous strides. She is happier, more engaged, and sleeping much better.
Caroline’s health journey has had the most ups and downs. Last summer she started by having gastro problems, trouble eating, and feeling extreme nausea- all of the time. She still has this issue but all of her gastro tests came back as normal. She has also had some neurological issues with buzzing in her head (imagine a lawnmower in your head), tinnitus, migraines, night terrors, and a type of paralysis that comes with her allergic attacks. The allergic attacks range from passing out when she smells, touches, or eats something (the list of things in this list is ever growing and we never know what new thing will cause it to happen). She has also reacted by having mild anaphylaxis (which at any time could go to full blown) and the paralysis I mentioned which will last from 30 minutes to an hour. We have seen many doctors about these issues. This week we are seeing our second neurologist and we are traveling to Jackson to see our third allergist. Many doctors will look at the symptom list and either tell you it’s not their field, they don’t recognize it, or the really wonderful ones (note sarcasm) will tell you it’s all in your head- no pun intended. She is also going to be seeing an endocrinologist and cardiologist in the near future.
Rachel has seen huge improvements in the last 9 months. In October of 2015 we bought her a wheelchair because she was gradually getting weaker and by January of 2016 she couldn’t walk more than a few steps without collapsing. Part of this is due to POTS (Postural Orthostatic Tachycardia Syndrome), and part of it has a neurologic component that we haven’t pinned down yet. The neurologist initially thought she had cataplexy (part of narcolepsy) but the sleep study didn’t show that. We go back in a few weeks to see what we can determine there. She also began having a lot of neck pain last summer and began using a neck brace. In August she began PT and they helped her a great deal. By the end of it she was able to walk around with the aid of a walker. Then her aunt and uncle gave her a treadmill which helped her endurance and by Oct she was walking in a store for the first time unaided. Now she only uses the chair very rarely on a really bad pain/weakness day and she hardly ever needs the neck brace. Rachel is also having some issues that seem similar to Caroline’s allergy issues (not the passing out though) so we have been using some antihistamines with her and they seem to be helping.
Hannah has many of the same issues that Rachel and Caroline experience but sadly can take little medicine to alleviate the issues. Back in the fall the doctor put her on Claritin to try to help the issues and after taking one pill (it was gluten free) it had her in bed barely able to function for 2 weeks. Thankfully she is able to take Gabapentin for her fibro which is really helping. She has started to take some vitamins that seem to be helping, but she has to add them in very slowly. It can take two weeks to get her up to a full dose. She has to start by holding the pill, then she moves on to tasting a little and gradually increases until she is able to take the pill. We have found that by going this slowly we can often find something that causes her a reaction. Though that didn’t work with the Claritin. She is also able to take BC when she has pain (most days) and we are very thankful she is able to tolerate it.
I was able to go to the doctor in November and was also diagnosed with Fibromyalgia. I suspected that I had it for years, but back when it first flared up there wasn’t really anything doctors were doing for it and it seemed manageable, so I didn’t worry about it. The doctor started me on Gabapentin as well but unfortunately I don’t respond as well as the girls do to it. For me it makes me really tired and run down feeling. I have heard from others that it causes them severe neurological issues. I will go back in a few weeks and will talk to him about some other alternatives. The day after Christmas was a very sad day for us because my mother died. She had been in declining health for 2 1/2 years. It was a very sad time, but it was good to be able to re-connect with family we hadn’t seen in so very long.
Here are some stats from the last 9 months:
ER visits: 4
Hospital admissions: 1
Major Tests: 6- colonoscopy, endoscopy, swallow study, gastric emptying, gall bladder function (2)
Major Tests: 2- sleep study, nerve conduction
ER visits: 1
Every time they go to the doctor there is usually some type of bloodwork to be done, so we wouldn’t really count that as unusual.
This brings you up to date on our life and the wild roller coaster ride that it is. We have been truly blessed through these trying times with strengthening love for one another and seeing how God sustains us even in the most difficult of times. This slideshow is a small glimpse into our life over the last 9 or so months. I’d love to hear from you, so please leave a comment and let me know who you are. If you have any questions, please feel free to ask and I will answer them to the best of my ability.